HemAware Fall/Winter 2025

p.12 | BUILDING RESILIENCE

p.13 | VOICES FOR CHANGE

p.22 | AWARDS OF EXCELLENCE

Here’s what parents can do to help their children thrive.

Women with bleeding disorders are speaking up and inspiring progress.

NBDF honored these change-makers in the bleeding disorders community.

The Bleeding Disorders Magazine

| hemaware.org

THE POWER OF COMPREHENSIVE CARE

A Day in the Life of an HTC p.16

FALL / WINTER 2025

SPEAK YOUR

TRUTH

TOO MANY

INFUSIONS

BREAKTHROUGH

BLEEDS

ABOUT MANAGING YOUR

HEMOPHILIA A

Are you making trade-offs by compromising on bleed protection or ease of administration?

ACHES AND

PAINS

PAINFUL

INJECTIONS

Nikola lives with hemophilia A.

HAVE YOU EXPERIENCED THESE ADMINISTRATION CHALLENGES?

BREAKTHROUGH BLEEDS STILL HAPPEN— ARE YOU REPORTING THEM ALL?

Large needles for nonfactor injections and factor infusions

Every bleed matters—joint bleeds can lead to joint damage, long-term pain, and reduced mobility and can impact your activities.

Injecting large volume doses for better bleed coverage Too many steps, such as mixing product or waiting for it to come to room temperature Too many supplies, such as vials and transfer needles

YOUR VOICE MATTERS.

SPEAK UP ABOUT ANY TRADE-OFFS YOU’RE MAKING.

novo nordisk

Some people with hemophilia A reported more bleeds in a survey than recorded in their medical records.a a

A study asked people with hemophilia how many bleeds they had in the last 2 weeks, and then checked if the answers matched what was recorded in their medical records. These results might show that some bleeds are not always reported to the doctor. Limitations of this data may include patient’s willingness to report their bleeds, whether patients accurately recalled their number of bleeds or the correctness of their medical records.

Learn more about ongoing research at:

Novo Nordisk Inc., 800 Scudders Mill Road, Plainsboro, New Jersey 08536 U.S.A. Novo Nordisk is a registered trademark of Novo Nordisk A/S. © 2025 Novo Nordisk Printed in the U.S.A. US24HRBD00078 April 2025

SpeakYourHemTruth.com

H E M AWA R E M A G A Z I N E

Inside

Cover Story 16

FA L L / W I N T E R 2 0 2 5

In Every Issue 3

Hemophilia treatment centers provide care beyond measure.

A Day in the Life of an HTC Managing a bleeding disorder can be complex, but hemophilia treatment centers simplify care. We visited UTHealth’s Gulf States Hemophilia and Thrombophilia Center to see how their team approach helps patients live healthier, fuller lives.

EXECUTIVE LETTER

5

HEALTHY START

How to talk to your doctor about treatment options; learn about Community Voices in Research and the Neil Frick Resource Center.

hemaware.org | F A L L / W I N T E R 2 0 2 5 | 1

H E M AWA R E M A G A Z I N E

Inside

FA L L / W I N T E R 2 0 2 5

15

13

26

Living Well

Community in Action

11 Mind & Body

22 NBDF Update

Some dietary supplements can be dangerous if you have a bleeding disorder.

The Awards of Excellence were presented at the 2025 Bleeding Disorders Conference.

12 Family Matters Here’s what parents can do to foster resilience in their children.

13 Women’s Health This year’s advocacy day focused on the unique challenges of women and girls with bleeding disorders.

14 Generation Next Coping with career setbacks: Advice for young professionals.

15 In Our Prime Learn how to spot the warning signs of anxiety and depression and get help.

24 Chapter Roundup A snapshot of three successful men’s retreats that were held in 2025.

25 Global Focus The World Federation of Hemophilia 2026 World Congress is coming to Kuala Lumpur.

26 Philanthropy Matters Longtime supporter Brian Andrew shares why he gives back to the bleeding disorders community.

27 Pipeline Learn about advances in care for Glanzmann thrombasthenia and von Willebrand disease.

28 My Journey Waylon Page is living proof that young people can be powerful advocates.

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hemaware.org

President and CEO Philip M. Gattone, M.Ed.

In Focus PRESIDENT AND CEO PHIL GATTONE, M.ED.

Chair of the Board Ryan Griffith

Vice Chair of the Board Susan Hartmann

HTCs stand as the cornerstone of comprehensive care in the bleeding disorders community.

Treasurer Joseph Alioto, M.D.

ISSUE CONTRIBUTORS Antonio Alexander; Brian Andrew; Betsy Boegeman, MSW, LICSW; Leslie Brady; Angela Brown; Elijah Burdine; Donna Coffin; Caiden Cranfill; Tate Denison, BSN, R.N.; Miguel A. Escobar, M.D.; Sabrina Farina, LMSW; Daisy Garcia, BSN, R.N.; Laura Glover, PT; Rida Haider, MS, CGC; Kevin Harris; Shanthi Hegde; Joanna Larson, FNP-C; Brooke Loving; Kristin Maher, M.D., Ph.D.; Natalie Montanez, FNP-C; Chelsee Nabritt; Waylon Page; Rajiv Pruthi, MBBS; Mark Reding, M.D.; Adair Almaguer Rodriguez; Danielle Rowley; Jessica Selingo, LSW; Teri Willey; Mosi Williams, Psy.D.

Executive Editor Beth Marshall

Advertising Sales Jay Patel, jpatel@bleeding.org

Contributing Staff Associate Angelina Wang

Caring Beyond Measure MANIFEST.COM

EDITORIAL, DESIGN & PRODUCTION MANAGEMENT Managing Editor Donna Behen, donna.behen@manifest.com

Associate Creative Director Tami Rodgers

Senior Editor Matt Morgan

Art Director Angela Koch

Production Director

P H OTO G R A P H Y BY N ATA L I A W E E DY

Laura Marlowe HemAware (ISSN 1088-7008) is published two times annually by the National Bleeding Disorders Foundation (NBDF), 1230 Avenue of the ­Americas, 16th Floor, New York, NY 10020, 212.328.3700, toll free 800.42.HANDI, fax 212.328.3777. The opinions expressed are those of the authors alone and do not represent the opinions, policies, or position of NBDF, the Board of Directors, or editorial staff. This ­material is pro­vided for your general information only. NBDF does not give medical advice or engage in the practice of medicine. NBDF under no circumstances recommends particular treatments for specific ­individuals and in all cases recommends that you consult your physician or local treatment center before pursuing any course of treatment.

All manuscript submissions should be typed double space, between 500 and 1,000 words in length and sent by email to donna.behen@manifest.com. HemAware retains the right to edit submissions. The content of the article is the responsibility of the author(s) and must be original work that has not been, nor will be, published elsewhere. A copyright agreement attesting to this and transferring copyright to NBDF is required.

Acceptance of advertising for products and services in HemAware in no way constitutes endorsement by the National © Bleeding Disorders Foundation. 2025 National Bleeding Disorders Foundation.

Hemophilia treatment centers (HTCs) play an essential role in ensuring that individuals and families receive the highest standard of care. Established in the early 1970s and now totaling approximately 140 federally funded centers nationwide, HTCs stand as the cornerstone of comprehensive care in the bleeding disorders community.

The providers who staff these facilities — physicians, nurses, social workers, physical therapists, and many others — bring an extraordinary depth of knowledge, skill, and commitment to everything they do.

To get an up-close look at what goes on during an HTC visit, we sent a writer and photographer to spend a morning at UTHealth’s Gulf States Hemophilia and Thrombophilia Center (GSHTC) in Houston. On Page 14, you’ ll read about the recent visits of two

young men with hemophilia at GSHTC, and why they consider these appointments so valuable.

At NBDF, we salute all HTC providers for delivering world-class comprehensive care, supporting patients and families with advocacy and education, and advancing research that improves outcomes for the entire community.

This digital-only issue marks a change in how you will be receiving HemAware. We are moving away from the printed version and into online-only content. We are still committed to everything that HemAware and NBDF stand for: elevating community voices, unbiased resources and information, and deep dives into topics that matter to you, but now we will be able to deliver it to you in a more timely and ecologically minded manner.

Online | hemaware.org National Bleeding Disorders Foundation: bleeding.org Facebook: @NationalBleedingDisordersFoundation X: @nbd_foundation and @NBDFespanol Instagram: @nbd_foundation TikTok: @natlbdfoundation

YouTube: youtube.com/@NBDFvideo Advocacy: bleeding.org/advocacy Steps for Living: stepsforliving.bleeding.org Victory For Women: victoryforwomen.org Better You Know: betteryouknow.org

hemaware.org | F A L L / W I N T E R 2 0 2 5 | 3

CELEBRATING ® 10 YEARS OF ALPROLIX SUPPORTED BY SANOFI’S COMMITMENT TO OUR COMMUNITY As it has for the past decade, our community continues to motivate and inspire us. That’s why we look forward to a future filled with possibility, backed by the community support that unites and raises us all.

CONNECT WITH A CoRe Sanofi Community Relations and Education (CoRe) Managers provide information about ALPROLIX, treatment options, and more. ©2024 Genzyme Corporation. All rights reserved. ALPROLIX and Sanofi are registered trademarks of Sanofi or an affiliate. MAT-US-2401992-v1.0-03/2024

Healthy Start S TAT S , FAC T S , A N D N E W S YO U C A N U S E

Lessons Learned We asked community members, “What advice would you give your younger self about navigating life with a bleeding disorder?”

Be proud of it.

You are unique.”

L E A J O N E S / S TO C K S Y.

B:11.125"

S:9"

T:10.875"

“You will accomplish everything you ever wanted to do . . . and then some.”

“Don’t let your bleeding disorder limit you from your passions!”

“Speak openly and confidently about your experience. Get involved!”

“I met others with my disease.

I finally got a diagnosis and medication. I am not alone.”

hemaware.org | F A L L / W I N T E R 2 0 2 5 | 5

Healthy Start |

S TAT S , F A C T S , A N D N E W S Y O U C A N U S E

HOW TO TALK TO YOUR DOCTOR ABOUT TREATMENT OPTIONS It can be overwhelming for people with hemophilia to make decisions about their care because of the abundance of new treatments available, including gene therapy. Many methods are so new, researchers haven’t compared them headto-head. To fully understand your options,

*W hich treatment will provide the best bleed protection for my specific circumstances? *W hich treatments are easiest for independent kids to manage? *A re any of your patients already on this new therapy?

Discussing new therapies can be

talk to your hematologist and discuss the

helpful, even if you’re not interested in an

pros and cons together. Conversations

immediate change for you or your child,

like these are part of the shared decision-

says Kristin Maher, M.D., Ph.D., director

making approach, where you and your

of the Hemophilia Treatment Center at

providers partner on your medical care.

Seattle Children’s Hospital.

The World Federation of Hemophilia’s

“Within the coming year, your child

shared decision-making tool can

may start having more breakthrough

make it easier to seek advice from your

bleeding or they’ll want to do activities

hematologist. The free online tool asks

they weren’t doing before, like sports

about your goals, treatment preferences,

participation. The flexibility of a different

and thoughts about your current therapy.

therapy could help,” Maher says.

You can print a summary, plus suggested

“Usually, we pick the most effective,

questions, to bring to your appointment.

safest drug, but these new therapies are

“It’s an educational tool that provides

all essentially equivalent,” says Mark

a guide for discussions with health care

Reding, M.D., director of the University

providers,” says Donna Coffin, director of

of Minnesota’s Center for Bleeding

data and research at the World Federation

and Clotting Disorders. “Some are

of Hemophilia in Montreal.

administered daily, weekly, every other

When you talk to your hematologist

month. Which drug is the best fit for

about new treatment options, consider

someone may be driven primarily by

asking the following questions:

factors like that.”

— Lisa Fields

Access the World Federation of Hemophilia’s shared decision-making tool: sdm.wfh.org

6 | F A L L / W I N T E R 2 0 2 5 | hemaware.org

MEET AN NBDF STAFFER

Teri Willey WHAT IS YOUR POSITION AT NBDF AND HOW LONG HAVE YOU BEEN DOING IT?

VO L H A K A L I A H A / S TO C K S Y. T H O M A S VO G E L / G E T T Y I M AG E S . I M AG E C O U R T E S Y O F T E R I W I L E Y.

I’m the founding managing director and an officer for NBDF’s venture philanthropy fund Pathway to Cures.

I am also a member of the Pathway to Cures Investment Committee.

I started with NBDF in November 2022 specifically to launch and lead Pathway to Cures.

Community Voices in Research: 5 Reasons Why You Should Participate People with bleeding disorders who provide details about their health within NBDF’s community-powered registry can help shape the future of bleeding disorders research.

NBDF’s Community Voices in Research (CVR) registry gathers information from patients and their family members about the mental and physical impact of their bleeding disorders. This first-of-its-kind community-powered database uses confidential online surveys to learn about participants’ lived experiences, needs, and priorities.

Everyone in the bleeding disorders community should consider joining CVR because: You’ll provide researchers with data that hasn’t been collected before, about the impact of symptoms on your daily life, your ability to access care, how you manage pain, and more.

You can print personal data from your CVR dashboard to bring to your HTC or the emergency room, to give new providers a more thorough picture of your health.

Sharing your personal experiences could help researchers identify questions or concerns that they hadn’t thought to investigate before.

5 Your responses can help to improve

ou’ll have access to research findings Y and aggregated data, which you can use to compare your personal experiences (about pain, breakthrough bleeds, or your ability to work) with those of the community at large.

treatments for the next generation of people with bleeding disorders.

Learn more about Community Voices in Research: bleeding. org/research/communityvoices-in-research

WHERE WERE YOU PRIOR TO COMING TO NBDF?

Most recently I was the founding managing director for the IU Ventures’ venture philanthropy fund. My career has been all about commercializing early-stage innovations for the benefit of the public.

WHAT DO YOU LOVE ABOUT YOUR JOB?

I love working with leading scientists, doctors, innovators, and investors developing solutions that address needs in our community now as well as building curative therapies for the future. We’re doing it through best practices in biotech investing to create a new source of revenue to secure the future for NBDF.

WHAT DO YOU THINK MAKES THE PATHWAY TO CURES INITIATIVE SO IMPORTANT FOR THE BLEEDING DISORDERS COMMUNITY?

Pathway to Cures exists to support NBDF in enabling cures for inheritable blood and bleeding disorders and to address and prevent the complications of these disorders.

Furthermore, we are here to create future revenue sources to assure NBDF continues to support the blood and bleeding disorders community through innovation, education, advocacy, and research.

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Advertisement

YOU CAN BE A PART OF A STUDY TO BETTER UNDERSTAND HEMOPHILIA B

MAKE AN IMPACT IN HEMOPHILIA B RESEARCH

HONEY-B aims to evaluate disease characteristics in people with hemophilia B that are receiving Factor IX (FIX) prophylaxis.

You may be eligible if you: • Are male (16 years old or older) • Have been diagnosed with moderately severe to severe hemophilia B • Have previous experience with FIX replacement therapy with a current, stable FIX prophylaxis regimen There are other requirements to participate.

Talk to your doctor to see if it might be right for you.

Protocol Number: R0000-HEMB-2187 © Regeneron Pharmaceuticals, Inc. All rights reserved.

To learn more about HONEY-B, scan the QR code or visit www.hemophilia-honey-b.com.

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LIVING WITH HEMOPHILIA B? The BEYOND-9 clinical research study is exploring an investigational* gene insertion therapy as a potential treatment for males with hemophilia B. *It is called investigational because it is not yet approved.

You may be eligible if you: • Are male (18 years old or older) NOTE: In the future, pediatrics are planned to be included in the clinical trial (between 2 and 17 years of age) • Have been diagnosed with moderately severe to severe hemophilia B • Have a current, stable Factor IX (FIX) prophylaxis regimen and previous experience with FIX replacement therapy

There are other requirements to participate.

Talk to your doctor to see if it might be right for you.

Please note that this clinical trial will use an investigational drug product, the safety and efficacy of which has not been fully evaluated by Regulatory Authorities and which has not received marketing authorization in any country.

Protocol Number: R131L1265-HEMB-2318 © Regeneron Pharmaceuticals, Inc. All rights reserved.

Together, we can make a difference in advancing research for hemophilia B. To learn more about BEYOND-9, scan the QR code below or visit hemophilia-beyond-9.com.

Healthy Start |

S TAT S , F A C T S , A N D N E W S Y O U C A N U S E

PATHWAY TO CURES BY THE NUMBERS

The fund supports earlystage biotech companies in exploring new treatments for bleeding disorders. By encouraging innovation, it aims to bring fresh solutions that address important needs in the community.

$2.85 M in the fund

200+ 5 already invested

companies reviewed for potential support

companies currently in the portfolio

Navigating the Changing Seasons: Support Through the Neil Frick Resource Center For people living with bleeding disorders, the colder months may intensify physical and emotional discomfort. Joint pain and mobility challenges may increase with dropping temperatures. Add to that the weight of holiday expectations — family gatherings, financial pressures/stress, grief from loved ones lost — and it’s no surprise that this time of year can feel overwhelming.

But no matter the season of life: You are not alone. The Neil Frick Resource Center exists to support individuals and families navigating life with bleeding disorders. Frick, who passed away in 2024, was NBDF’s senior vice president of medical programs and information.

The center, named in honor of Frick’s decades of commitment to patient care and education, offers a bevy of resources — educational, emotional support, financial assistance guidance, and access to trained professionals who understand the journey that you and your family members are on.

Whether you’re newly diagnosed or a lifelong member of the bleeding disorders community, the Resource Center can help lighten the load. From toolkits on stress management and joint health to one-onone consultations for navigating insurance or finding local support groups, their services are tailored to meet your needs, especially when times feel heavy.

During this season of shorter days and deeper reflections, remember to care for your emotional/mental health as much as your physical health. Lean on community.

Seek support (your HTC social worker is a good starting place!). And most of all, allow yourself space for reflection while also giving yourself permission to find moments of peace and connection.

Learn more about the Neil Frick Resource Center: bleeding.org/communityresources/request-information/theneil-frick-resource-center

N O B I _ P R I Z U E ; D M P / G E T T Y I M AG E S

$3.5 M

LIVING WELL

M I N D & B O DY

The Hidden Dangers of Dietary Supplements Some common “natural” remedies can interfere with your body’s ability to clot RISKY REMEDIES Not all “natural” options are safe for bleeding disorders.

SUPPLEMENTS MAY INCREASE SURGICAL BLEEDING According to a 2021 report in Mayo Clinic Proceedings on the preoperative management of surgical patients using dietary supplements, these include: Garlic extract Ginkgo biloba Glucosamine/ chondroitin Even people without bleeding disorders should avoid these supplements, especially before they’re scheduled to have surgery, Pruthi says.

SUPPLEMENTS CAN AFFECT PLATELET FUNCTION These include: Flaxseed Grapeseed Melatonin Both platelets and clotting factors make up your blood’s coagulation system — the process that stops bleeding when a blood vessel gets injured. “If you already have a compromised coagulation system, and then you’re just adding another variable that impacts your coagulation system, it has the significant potential to cause harm,” Pruthi explains.

—By Rita Colorito

J A K U B A N D J E D R Z E J K R Z Y S Z KOW S K I / S TO C K S Y.

How to Take Supplements Safely

Supplements can seem like a harmless addition to your wellness routine.

The reality is, unlike prescription medications, the U.S. Food and Drug Administration does not have the authority to approve dietary supplements for safety and efficacy before they hit store shelves. When it comes to bleeding disorders, some supplements may even prove harmful.

“We don’t always know the mechanism of harm for these supplements.

And it’s not just patients with bleeding disorders, but all individuals,” says Rajiv Pruthi, MBBS, a hematologist at the Mayo Clinic in Rochester, Minnesota. As director of the Mayo Clinic’s hemophilia treatment center and co-director of the Special Coagulation Laboratory, Pruthi conducts both patient-centered clinical research and laboratory research.

However, most research on supplements and bleeding focuses on people without bleeding disorders. Pruthi says that while there isn’t much clinical evidence on how specific supplements affect people with bleeding disorders and which they should avoid, research does find that certain supplements may cause harm in two different ways:

Before you take any supplement, always talk to your primary care doctor and consult the hematologist at your hemophilia treatment center. “My general advice is not to take supplements, especially if there is no clear benefit and also because of the unknowns,” Pruthi says.

A daily multivitamin is one exception. “Most multivitamins are pretty straightforward and have micronutrients that are very important for bodily functions,” Pruthi says. “But usually you should get everything you need in a well-balanced diet.” To be on the safe side, read the label to make sure none of the ingredients that can affect bleeding are in your multivitamin.

Your primary care provider can also make sure that what you want to take is safe for you and your medical history. Through blood tests, they can also check for common vitamin deficiencies and recommend vitamin supplements that make sense for you to take. When in doubt, always ask.

NBDF’s Steps for Living website has more information about dietary supplements and bleeding disorders: stepsforliving.bleeding. org/staying-healthy/nutrition/dietarysupplements-avoid/adults

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LIVING WELL

FA M I LY M AT T E R S

Raising Resilient Kids Here’s how to help your child thrive with a bleeding disorder

HOW TO FOSTER RESILIENCE IN YOUR CHILD

Supporting a child with a bleeding disorder means giving them tools — not just to manage their condition, but to grow confidently in who they are. Here’s how: Name it. “I think it’s really helpful for kids to have words to put to their experiences and feelings,” Boegeman says.

Create community. “Honestly, anybody who’s lived with a bleeding disorder — you don’t feel like anybody else can understand you,” Alexander says. “I didn’t know anybody else with the disease.” Whether it’s at a chapter event, at camp, or in an online platform, kids who meet others with the same condition feel less isolated and more “on the same page” with others who

EVER UPWARD Support every brave step your child takes.

“I keep going every day. Because I believe that you have one life to live. I want to live my life to the fullest, and with no regrets.”

— ANTONIO ALEX ANDER

understand what they are facing. Find a place where your kids can connect with other children with similar disorders.

Help your kids take agency. At any age, kids can be taught the particulars of their disease, and be encouraged to educate others about it. Empower them by including them in decisions about their health, Boegeman says. “Talk to your kids, not at them,” she adds.

“Acknowledge the hard,” Boegeman says. “Kids who have a bleeding disorder can be equipped with all the skills, knowledge, and ability to talk about

12 | F A L L / W I N T E R 2 0 2 5 | hemaware.org

it, and still have a bleed that really impacts them, physically and emotionally.” Recognizing that this is difficult builds a better chance that your child can experience it all and “move forward with it and get back to your normal life.”

Emphasize the “can,” not “can’t.”

“It’s only through challenges that you find out who you are and what you’re made of,” Alexander says. “If you don’t try and you don’t put yourself through the paces, you don’t find out that you can do things.”

—By Andrea Atkins

Visit NBDF’s Steps for Living website, which has lots of useful information for children, parents, and caregivers that’s based on age and stage of life: stepsforliving.bleeding.org

I L LU S T R AT I O N BY M I G U E L DAV I L L A .

Thanks to repeated injuries, the cartilage in Antonio Alexander’s right ankle has turned to “string cheese,” making even walking sometimes painful. But Alexander, of Bloomfield, Connecticut, is determined not to slow down.

“I still get up, I still stay active,” he says.

“I keep going every day. Because I believe that you have one life to live. I want to live my life to the fullest, and with no regrets.”

A l e x a n d e r, 2 2 , i s t h e f o u n d e r o f Tonyvisions, a media company that specializes in marketing and social media content. Diagnosed with hemophilia as an infant, he says his positive attitude overrides his limitations.

Pe o p le are not u sual l y born w ith such resilience; they learn it, says Betsy Boegeman, MSW, LICSW, a hematology clinical social worker at the Children’s Minnesota Center for Bleeding and C l o tt i n g D i s o rd e r s i n Mi n n e a p o l i s .

“Resilience is a skill that parents and caregivers have to try to equip kids with to conquer adversity and move forward.”

LIVING WELL

WO M E N ’ S H E A LT H

Speaking Up for the Silenced NBDF is putting women and girls at the center of advocacy Bleeding disorders affect both men and women, but all too often, health issues that affect women and girls are left out of policy conversations. That’s why this year the National Bleeding Disorders Foundation (NBDF) organized the first advocacy day specific to this population.

A SPOTLIGHT ON WOMEN’S HEALTH NEEDS

The perfect opportunity came on April 17 for World Hemophilia Day, whose theme this year was “Access for All: Women and Girls Bleed Too.” It followed NBDF’s Washington Days, an annual event held every March, which brought over 400 advocates to Capitol Hill this year.

On April 17, 40 advocates convened on Capitol Hill to discuss the impact bleeding disorders have on women and girls and to provide fact sheets so legislators

can better understand those affected.

The advocates split into teams to attend 36 scheduled meetings and went into 90 Congressional offices in total.

Their main objective: education and understanding. An estimated 1% of women in the U.S. — roughly 1.65 million — may have a bleeding disorder. Many women go undiagnosed, and for those who are diagnosed, it can take an average of 16 years between first symptoms and receiving a diagnosis. Von Willebrand disease is the most common bleeding disorder in women and girls, but hemophilia can also affect them. They often face additional challenges during menstruation, pregnancy, labor, and delivery.

Advocates shared their personal struggles. Chelsee Nabritt, an alumna of NBDF’s National Youth Leadership Institute, shared her experience with

platelet storage pool disorder. She asked legislators to imagine a woman or girl they love going through monthlong menstrual cycles, requiring medication to control bleeding, and needing iron and other supplements for nutrient depletion.

“Now imagine there being a cap on the insurance, or a cap on whether they can or cannot get the type of medication that they need,” Nabritt says. “That’s something that happens in our community, especially for women. And it can be pretty devastating.”

THE FIGHT FOR DIAGNOSIS AND ACCESS

In their meetings, NBDF also sought Congressional champions for legislation it is currently forming to improve diagnosis and access to care for this underserved population. “There was a lot of interest in the issue,” says Leslie Brady from the Artemis Policy Group, NBDF’s federal policy adviser. “Regardless of what other advocacy challenges we face, NBDF will continue to prioritize advocacy for women and girls with bleeding disorders.”

Nabritt says her team received positive feedback, with many staff members and legislators remembering NBDF from Washington Days.

“It’s important for everyone to really nail down their story and understand how to advocate for themselves, whether that’s to a legislator, to your teacher, or to your friends,” says Nabritt, who currently works for the Georgia Department of Behavioral Health and Developmental Disabilities. “Getting comfortable with speaking up for yourself is going to get you that much further ahead in life.”

D E S I G N E R 4 9 1 / G E T T Y I M AG E S .

—By Rita Colorito

Get Involved STRONG VOICES Women with bleeding disorders are advocating for a better future.

If you want to participate in NBDF’s next Washington Days or your state’s next advocacy day, contact your local NBDF chapter. “The passion and lived

experiences that advocates for the bleeding disorders community bring to the table are the most important piece of NBDF’s policy work,” Leslie Brady says.

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LIVING WELL

G E N E RAT I O N N E X T

SHIFTING STRATEGY The next move isn’t always clear for young workers.

“Ask yourself, ‘What does this company stand for, and will they support me?’”

Graduating into Uncertainty Here’s how to cope with job and career setbacks Just months before graduating with degrees in psychology and biology from Northeastern University, Shanthi Hegde was thrilled to receive an opportunity to serve as a postbaccalaureate research assistant at the National Institutes of Health. But then the administration in Washington changed, budget cuts followed, and Hegde’s job offer was paused because of cuts to NIH-funded postbaccalaureate programs.

Fo r He g d e , w h o h a s b o t h v o n Willebrand disease and factor VII deficiency, the experience was extremely deflating. “It’s been very challenging as a new grad, especially to go into this job market,” she says.

Hegde is not alone. The employment landscape is changing with many entrylevel jobs being replaced by artificial intelligence. Recent grads may need to look longer and even rejigger their career dreams. Hegde had planned to work in a lab, but her chronic conditions have disrupted her ability to be in the lab full time. Now, she hopes to get a remote or hybrid job in patient advocacy. “It’s a really tough situation to be in,” she says.

ADAPTING CAREER DREAMS

Job searching can be psychologically draining, says Jessica Selingo, LSW, a medical social worker at the Cardeza

14 | F A L L / W I N T E R 2 0 2 5 | hemaware.org

Foundation Hemophilia and Thrombosis Center in Philadelphia. “It takes a toll on your self-esteem. You think, ‘Why am I not good enough?’”

Selingo counsels people who are looking for a job to stay patient with themselves and the situation, and to keep working at it. Here are some other tips: Don’t limit yourself. If a job listing says one to two years of experience, apply anyway. “The worst they can say is no,” Selingo says.

Tailor your resume to the job listing. “The company is probably running your resume through a program to see if it has words that match the description,” she says. Edit yours to have those words.

Look for mentorship. Hegde has found many people willing to help.

“These are key people that I will be forming connections with, and they’re kind and willing to help,” she says.

Nail the interview. If you’re invited to interview, bring your passion and determination and make it clear you’re willing to learn along the way, Selingo says.

Consider the work environment. If you’ve got a bleeding disorder, where you work matters just as much as the job, Selingo says. “Ask yourself, ‘What does this company stand for, and will they support me?’” she says.

Seek support from your hemophilia treatment center. Social workers like Selingo are available to help you with all kinds of issues — including job hunting and management of your condition once you start work. “I’ve talked to HR for patients, written letters for them, and advocated for them. No one should have to face this alone.”

—By Andrea Atkins

E VG E N I Y S H V E T S / S TO C K S Y.

— JESSICA SELINGO

LIVING WELL

IN OUR PRIME

Get Help for Anxiety and Depression Learn how to spot emotional warning signs — and what steps to take Reaching middle age with a bleeding disorder can take a toll on your mental health. The reality of outliving many of your peers, the uncertainty of aging without a road map, and the fear that your treatment could be phased out can be daunting.

“Some people focus on their bleeding disorder, thinking, ‘It’s a physical thing. I can power through everything else,’ but they don’t realize that the mind and body are one unit,” says Mosi Williams, Psy.D., a licensed clinical social worker at UCSF Medical Center’s Adult Hemophilia Treatment Center in San Francisco. “They may not see the impact of stress or chronic pain and how that can impact our mood states.”

Older people may not recognize depression or anxiety in themselves if they don’t feel overwhelmingly sad. But losing interest in favorite activities, feeling emotionally numb, or getting angry more often can all be signs of these conditions.

“For men, anger is a more socially acceptable emotion than saying, ‘I’m depressed,’” he says. “I’ve seen patients who feel like they have nothing to look forward to. They’re slowly losing their activities due to mobility, and there may be a loss of identity.”

Stay Active

Socialize

Consider Therapy

STEPS YOU CAN TAKE If you start to notice changes in your mood and emotions, take the following steps: Visit your primary care provider. They can refer you to a therapist or prescribe medication, if necessary. You can also reach out to your hemophilia treatment center team and social worker for guidance.

Find people who listen. Talking about your feelings with friends or relatives may help.

“Figure out the support you have in your life and within the bleeding disorders community,” Williams says. “Through local chapters, you can find support groups for men and women. They are not necessarily clinical (therapy) groups, but they are great opportunities to gather, engage, and connect.”

Stay active. Physical activity can improve your mood. So can spending time in nature.

Socialize. Go out with your friends or rekindle old friendships. “Connecting with others can help some people

through loneliness,” Williams says.

Plan for the future. Be intentional about what you’d like to do in your 50s, 60s, and beyond.

“We make plans for getting married, getting a job, having children,” Williams says. “What about this stage? If we don’t know what’s next, that uncertainty can contribute to feeling hopeless.” Start to visualize what this period of your life could look like.

Do you want to travel?

Downsize? Start having these conversations with your family so it doesn’t feel so overwhelming.

Lean into therapy.

Starting may feel uncomfortable — and you may have to shop around to find someone you feel at ease with — but therapy can be beneficial. “I’m a therapist, and I get therapy because it helps me,” says Williams, who has severe hemophilia A. “There are times where I need support, and other times, it’s nice to have a professional clinician to help you process things or set goals.”

E Y E E M M O B I L E G M B H ; A P P L E U Z R / G E T T Y I M AG E S .

—By Lisa Fields

“For men, anger is a more socially acceptable emotion than saying, ‘I’m depressed.’”

— MOSI WILLIAMS, PSY.D.

DON’T GO IT ALONE Connecting with others can help combat loneliness.

The Steps for Living website has a wealth of information about aging well with a bleeding disorder: stepsforliving.bleeding.org

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THE POWER OF COMPREHENSIVE CARE

I T

T A K E S

A

V I L L A G E

WRITTEN BY KAYT SUKEL. PHOTOGRAPHY BY ANNIE MULLIGAN.

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THE POWER OF COMPREHENSIVE CARE

For adults and children living with hemophilia and other bleeding disorders, getting the right care often means juggling appointments with multiple specialists, navigating insurance hurdles, and finding providers who truly understand the complexities of their condition.

Hemophilia treatment centers (HTCs) were created to address these needs. For more than 50 years, these specialized clinics have been bringing together a full team of health care providers — physicians, nurses, genetic counselors, social workers, physical therapists, dentists, and more — under one roof to provide coordinated, patientcentered care. This unique and holistic approach has been shown, time and again, to improve patient outcomes and help people with bleeding disorders live longer, healthier, and happier lives.

For a close-up look at this unique health care model, we spent a morning at one of the roughly 140 HTCs located across the U.S., where patients can address every aspect of their health in a single visit.

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THE POWER OF COMPREHENSIVE CARE

It’s 8:15 a.m. on a Wednesday in July and Caiden Cranf ill, 19, is checking in at U THealth’s Gulf States Hemophilia and Thrombophilia Center (GSHTC) in Houston. He and his grandmother, Sheila, are warmly welcomed by the front desk staff. Twice a year for the past 14 years, Caiden has visited the HTC for guidance on how to manage his moderate hemophilia A. After a few minutes, Caiden is escorted into the clinic, where nurse coordinator Tate Denison, BSN, R.N., documents his weight and vitals. Caiden shares that he’s starting college in the fall and will do so while working as an assistant manager at a popular clothing store. The future is on his mind — and it’s something he wants to discuss with the GSHTC team.

“I’m in a ver y transitional period of my life, and I want to learn more about how to manage my own health care, learn more about new treatment options, and also learn about potential learning opportunities so I can get more involved in the community,” he says.

During today’s hemophilia-specific clinic, Caiden, as well as other patients, will meet with a medical “village,” a half dozen members of the HTC comprehensive care team during a single, multi-hour appointment.

8:30 AM

NURSE COORDINATOR Once within the quiet of the examining room, Denison takes Caiden through an initial intake, gathering important information about his history and current health status, including recent bleeds, ER visits, and hospitalizations, to provide a baseline for the other HTC team members.

“Most of the questions are what anyone would get at the doctor’s office — medical history, allergies, current medications,” Denison says. “But we also have some questions specific to hemophilia care. Is the patient carrying their medical alert? Are they keeping infusion logs for their therapy? When was their last infusion? What about their last bleed?”

After finishing with Caiden, Denison calls the next patient, Adair Almaguer Rodriguez, a 26-year-old man currently working at a wedding venue, to do his intake. Adair was diagnosed with severe hemophilia A as an infant and is also focused on improving his own health care management. He’s been coming to this HTC for as long as he can remember, attending his biannual appointments with his brother and his cousins.

“My mom and her two sisters both have kids with hemophilia, and we’d all come in at the same time,” he says. “The clinic was just packed with my whole family, which was really convenient for us so everyone could be seen at the same time and learn what we needed to do.”

TAT E D E N I S O N BSN, R.N.

N ATA L I E M O N TA N E Z FNP-C

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I F T H E P AT I E N T S C A N ’ T C Many people with hemophilia are unable to regularly receive care at the Gulf States Hemophilia and Thrombophilia Center (GSHTC) because they live too far away or can’t afford to travel there.

That’s why, twice a year, the GSHTC team travels to El Paso, Texas, to provide those in the area with an HTC satellite clinic. The Houston office, in the Texas Medical

THE POWER OF COMPREHENSIVE CARE

We know that this integrative, holistic model is the best way to manage bleeding disorders like hemophilia. It’s very effective not just for the patients, but for the caregivers, the payers, the policymakers, and the clinics themselves.

M I G U EL A . ES CO BA R , M . D., G S HTC M ED I C A L D I R ECTO R

9:15 AM

8:45 AM

NURSE PRACTITIONER HEMATOLOGIST The HTC team meets at the beginning of ever y week to discuss the patients who will be coming into clinic. Miguel A . Escobar, M.D., GSHTC ’s medica l director, spends his time with patients like Caiden and Adair with the goal of addressing any potential issues.

“As a hematologist, my main concern is whether the patient is on prophylaxis to prevent bleeds. Are they compliant with the treatment? Are there any upcoming surgeries we need to plan for?” he says.

“Every patient is different. We treat each patient according to their needs.”

MIGUEL A . ESCOBAR M.D.

JOANNA L ARSON FNP-C

While Adair converses with Denison, Caiden receives his next visitor: a nurse practitioner (NP). Natalie Montanez, FNP-C, says she and her fellow NP, Joanna Larson, FNP-C, offer shared decision-making to their patients, an approach to treating diseases in which patients are partners in their own care. But where they really shine is “bridging the gap between clinical care and daily living.”

“Ever y t h ing t hat happens a f t er t he v isit , whet her there’s a struggle or need for a dose adjustment, or maybe modif y ing for life events, we can act as that prov ider,” Montanez explains.

Montanez spent her time with Caiden discussing how to manage his disorder with all the upcoming life changes.

“We help patients find the best strategy for their goals,” Montanez says. “Once we have that plan, we are really focused on how to make that happen. With college, we ask questions: Will you have access to a fridge for your medication? Do you have access to a campus health center? Are you aging out of your parents’ insurance? You need all the logistics to come together to take the plan and make it a reality.”

OME TO THE HTC . . .

Center, serves nearly 750 patients who travel there from within a 200mile radius. Yet El Paso, in the western part of the state, is, as nurse practitioner Joanna Larson puts it, “kind of a desert for hemophilia treatment.”

“We rent some space at the El Paso Children’s Hospital clinic and spend time seeing local patients there,” she says. “The idea is that we can help them manage their hemophilia

through the HTC model. They may have a local hematologist for emergencies, but we can manage their medications, give them advice, and provide everything we do in Houston.”

Escobar, GSHTC’s medical director, says that many of the country’s HTCs operate these kinds of satellite clinics.

Having an experienced clinical team willing to travel makes it easier for

patients in more remote areas to get the care they need.

“People will even travel from New Mexico and from across the border when we go to El Paso,” he says.

“They know they can trust our team because we’ve been working with them for so long. Our goal is zero bleeds for each patient, and we, as a team, work together for every patient to try and achieve that.”

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NO TWO HTCS ARE THE SAME

THE POWER OF COMPREHENSIVE CARE

9:45 AM

Not all hemophilia treatment centers (HTCs) have the same resources or programs, and one of the main reasons is that their funding can vary widely.

Most HTCs receive support from a mix of federal and state grants, hospital or university budgets, and income generated through the federal 340B Drug Pricing Program, which allows centers to purchase certain medications at discounted prices and use the savings to support patient services.

Because funding sources differ from one HTC to another, the scope of services, staffing, and community programs they offer may not be the same.

GENETIC COUNSELOR Rida Haider, MS, CGC, visits separately with both Caiden and Adair to provide vital genetic education. She says the HTC model doesn’t just provide genetic counseling at the time of diagnosis, but across “the entire journey of the patient.” She makes sure to get a few minutes in with each patient during their appointment. “ This bleeding disorder ha s a n X-li n ked i n her it a nc e model, wh ich means people can be carriers and not s y mpt omat ic , a nd t hat ma ke s it so important to ensure that every patient is aware of this and can discuss that risk with their future and current partners, as well as any children,” she says.

10:15 AM

SOCIAL WORKER

RIDA HAIDER MS, CGC

S A B R I N A FA R I N A LMSW

Successfully managing hemophilia requires more than just the right treatment regimen, says Sabrina Farina, LMSW. In addition to treating mental health issues, HTC social workers also help with navigating financial and insurance concerns and facilitating access to community resources.

“My job is to be there for patients during even the most delicate, fragile times in their lives and to help them understand what is happening and how to best move forward,” she says. “It’s really about making sure that patients stay safe and feel like they are in a safe place.”

Adair says he appreciates speaking with Farina during his visits. “She’s always been really nice and helpful,” he says.

“And she’s someone I’m very comfortable talking to.”

OTHE R HTC S PECIALISTS: DE NTISTS AND PHYSICAL THE R APISTS Most visits at GSHTC include meeting with a physical therapist and dentist.

Physical therapy is an important specialty for people with bleeding disorders, since a common complication of hemophilia is joint bleeds, Escobar says. “Working with a physical therapist can help determine the health of a patient’s joints and help them learn to avoid issues that may cause a bleed and make sure they can recover promptly after a bleed,” he says.

Adair says one of his main goals during his visit is to ensure that he can remain active. He plays soccer and works out regularly. Having a physical therapist with hemophilia-specific musculoskeletal training helps Adair and patients like him maintain their physical abilities and avoid injuries.

“Many of our patients want to stay active so we help them modify their exercise programs or sports activities so they can protect their joints and

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prevent problems,” says Laura Glover, PT. Far too many patients avoid exercise, Glover says, because they are concerned about potential bleeds or are suffering from joint pain. Yet, regular movement — as well as maintaining an appropriate weight — helps keep the joints and the rest of the body healthy.

“If patients want to play sports, we go over the risk of those activi-

ties. We tell them how they can best protect themselves with safe gear like helmets or shin pads,” she says. “But we really encourage every patient to exercise in some way. Even if someone may be experiencing pain, you can find low-load, low-intensity exercises like tai chi, swimming, or body weight exercises that can help them stay fit and avoid chronic joint disease in the future.”

THE POWER OF COMPREHENSIVE CARE

DAISY GARCIA BSN, R.N.

DORIAN WILLIAMS BSN, R.N.

10:30 AM

RESEARCH NURSE Both Caiden and Adair are currently using a bispecific antibody drug to help manage their hemophilia. Several other patients from GSHTC participated in research trials for the dr ug, helping make way for its approval by the Food and Drug Administration in 2017. The HTC has two research nurses who provide both administrative and clinical support for bleeding disorder research studies with the potential to advance new treatments, as well as to optimize current studies for the clinic’s patients.

“We generally have about 30 studies going on at any time,” says Daisy Garcia, BSN, R.N., a GSHTC research nurse.

“We present all of our patients with any clinical trials they may be eligible for, answer their questions, and then they have the option whether they want to participate or not.”

Larson says GSHTC puts a high premium on consistent dental care, and offers it as part of each patient’s biannual visit to make sure their teeth and gums remain in good shape. “Some of our patients haven’t seen a dentist in 20 years, because they are afraid of a bleed or were told by a doctor they shouldn’t see a dentist because of the bleeding risk,” Larson says. “Our dental program allows them to get the care they need and do it safely.”

11:15 AM

PHLEBOTOMIST Once a patient finishes seeing everyone on the provider team, they have one more stop: the laboratory. There, nurse Dorian Williams, BSN, R.N., preps Caiden and then the phlebotomist does an inhibitor screen, a complete blood count (CBC) panel, and other tests to make sure treatment regimens are working.

“We can order any thing any other practitioner can,” Denison says. “But no one has to be worried about bleeding because we use special tourniquets made for patients with bleeding disorders.”

On his way out the door, Caiden says he appreciates having the HTC team to guide him. He says it makes him much more confident about his future.

“Getting this kind of specialized care is completely different than what you can get somewhere else,” he says. “Everyone here has been great in helping me find a way to manage my care on my own. It’s a daunting task, but knowing I can call the nurse or the doctor and get my questions answered makes it a little bit easier.”

Find a hemophilia treatment center near you: dbdgateway.cdc.gov/HTCDirSearch.aspx Learn more about shared decision-making: bleeding.org/bleeding-disorders-a-z/treatment/ shared-decision-making Learn more about exercising safely: bleeding.org/sites/default/files/document/files/ playing-it-safe_0.pdf

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COMMUNITY IN ACTION

N B D F U P DAT E

2025 Awards of Excellence H

The bleeding disorders community comes together once a year for education and co Disorders Foundation’s (NBDF) annual Bleeding Disorders Conference. During the co efforts made by people — both in a professional capacity and through volunteer wo lives of those living with bleeding disorders. Here are the recipients of NBDF’s

ADVOCATE OF THE YEAR Candi Mitchum

Diagnosed with von Willebrand disease in her 20s, Mitchum has made it her personal mission to ensure that people with VWD don’t suffer without treatment the way that she did. She is deeply committed to advocacy with the Bleeding Disorders Association of South Carolina.

CHAPTER VOLUNTEER OF THE YEAR Antonio Jenkins

Jenkins has made a difference in the lives of a generation of kids with bleeding disorders through his volunteer efforts with Hemophilia Foundation of Michigan. Through camp, family days, teen retreats, and other events, he lends a hand with activities and planning and is a source of inspiration and guidance.

GENETIC COUNSELOR OF THE YEAR Mary Pat Bland, M.S., CGC

Bland, a genetic counselor at Oregon Health & Science University, is a national leader in bleeding disorders genetic counseling, by educating peers, cochairing a key subcommittee, and working toward guidelines to support genetic counselors entering the field.

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LIFETIME ACHIEVEMENT AWARD Glenn Pierce, M.D., Ph.D.

Pierce has worked on behalf of the bleeding disorders community in both a professional and personal capacity for most of his adult life. As a researcher and advocate and a survivor, leader, and mentor, he is an inspiration for our entire community.

LORAS GOEDKEN OUTSTANDING LEADERSHIP AWARD Ryan Crowe

Crowe has held several key leadership roles for the Texas Central Bleeding Disorders chapter, including board president. As a member of the Texas Bleeding Disorders Coalition, he has testified at the state Capitol several times and provided crucial testimony for a bill eliminating copay accumulator adjuster programs.

LIVED EXPERIENCE EXPERT OF THE YEAR Ray Stanhope

Stanhope is a longtime leader in the bleeding disorders community and has used his considerable knowledge and expertise to enhance NBDF’s community-centered research initiatives.

RESEARCHER OF THE YEAR Len Valentino, M.D.

Valentino has been a powerhouse in the field of bleeding disorders research for decades. He continues to lend his expertise through his work with NBDF’s Pathway to Cures and the World Federation of Hemophilia USA. RYAN WHITE YOUTH AWARD Waylon Page

Page has been a tireless advocate since he was 7 years old, involved in fundraising, education, and awareness, and most recently, state legislation. He played a key role in the enactment of a law requiring bleeding control kits and trainings in Connecticut. Read more about Page on Page 26.

PHILANTHROPIST OF THE YEAR Brian Andrew, CFA

Honorees

onnection at the National Bleeding onference, NBDF recognized the ork — to change and improve the 2025 Awards of Excellence.

MARY M. GOOLEY HUMANITARIAN OF THE YEAR Connie Montgomery

Montgomery is a tireless champion for people with bleeding disorders who are too often overlooked. Through global patient advocacy and health care workshops, she has been an inspiring force in the community for decades.

I M AG E S C O U R T E S Y O F N B D F M E M B E R S .

MARY M. GOOLEY HUMANITARIAN OF THE YEAR Peter Marks, M.D., Ph.D.

Marks has been a long-standing ally for the rare disease community through his work with the Food and Drug Administration and has overseen major advances in gene therapy and blood donor policy. He has combined scientif ic expertise with compassion to improve safety and care for people with blood and bleeding disorders.

NURSE OF THE YEAR Joe Stanco, DNP, FNP-BC, CPI

Stanco, from Northwell Health in New York City, brings lab expertise, research innovation, and a patient-first approach to bleeding disorders care, improving outcomes and strengthening community trust.

Andrew has been a champion of NBDF for nearly 20 years, guiding strategy, advancing innovation, and securing vital resources and funds. As founding chair of NBDF’s Pathway to Cures, his leadership and generosity have been indispensable to NBDF. Read more about Andrew on Page 24.

PHYSICIAN OF THE YEAR Jordan Wright, M.D.

Wright is a dedicated pediatric hematologist from Dayton Children’s Hospital in Dayton, Ohio, who brings care, education, and commitment to his patients and the bleeding disorders community.

PHYSICAL THERAPIST OF THE YEAR Makenzie Sledd, PT, DPT

Sledd, of St. Louis Children’s Hospital, is a collaborator, educator, and patient advocate. Through 17 years of service, she’s built deep connections with both the community and her peers.

SOCIAL WORKER OF THE YEAR Marissa Zanno, LSW

Z a n n o , o f C h i l d r e n’s N a t i o n a l Ho s p i t a l i n Washington, D.C., has founded a parent support group, expanded access to care for underserved families, led clothing drives, and spearheaded education for school staff.

ZIGGY DOUGLAS INNOVATION IN YOUTH PROGRAMMING AWARD Arizona Bleeding Disorders

The chapter has revitalized their youth programming, creating meaningful opportunities for young people to grow, connect, and become the next generation of community leaders.

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COMMUNITY IN ACTION

CHAPTER ROUNDUP

Fun, Food, and Fellowship Every year, men affected by bleeding disorders gather to talk, share, learn, and bond at retreats held around the country. Here’s a snapshot of the activities participants enjoyed at three recent men’s retreats.

GATEWAY BLEEDING DISORDERS ASSOCIATION AND MIDWEST HEMOPHILIA ASSOCIATION

Attendees put their outdoor skills to the test at this regional retreat, held July 11 to 13, at Jester Park in Des Moines, Iowa. The joint event was facilitated by Trails to Healthy Living, an organization that promotes wellness and personal growth through outdoor adventures and is run by Kevin Harris and Brian Rodgers, both of whom live with hemophilia B. “Brian and I share a lot of battles that we’ve dealt with in our lives and with that, these men just open up about their own struggles,” Harris says.

The weekend started with preparing distinctive rubs for steaks and cooking them over a campfire Friday night. Kayaking, fishing, and a spirited game of miniature golf took up most of Saturday.

But it was the late-night campfire discussions where bonds were really forged. “Participants said they walked away feeling more connected and supported than they had expected,” says Brooke Loving, executive director of Bleeding Disorders of the Heartland. Learn more

LOUISIANA HEMOPHILIA FOUNDATION

about the Nebraska Chapter of NBDF and Bleeding Disorders of the Heartland: ne.bleeding.org and bdheartland.org

GRILL TIME Steaks and fellowship were on the menu.

The 29 men who gathered at the Blue Dolphin Inn in Grand Isle, Louisiana, on July 18 to 20 for the Louisiana Hemophilia Foundation’s (LHF) annual retreat filled all the inn’s cabins.

They got to know each other Friday night while grilling steaks and then enjoyed programming from the local hemophilia treatment center.

Saturday was the main event. The chapter rented four fishing charter boats, each carrying eight men. Their efforts paid off with coolers filled with red snapper. However, “the deep-sea fishing trip wasn’t just about the catch,” says participant Elijah Burdine. “It was about connection. As men who live with or love someone with a blood disorder, being out on the water together gave us space to share, reflect, and support each other in ways that go deeper than words.”

The retreat has been held for five years in a row, which isn’t surprising to LHF Executive Director Danielle Rowley. “The men had the best time ever,” she says. Learn more about the Louisiana Hemophilia Foundation: lahemo.org

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The 700 acres of pristine green at the Old Kinderhook Resort and Golf Club formed the backdrop to a joint retreat, held March 21 to 23. After a welcome dinner Friday night, the group of 19 men learned about the important role of advocating for others with bleeding disorders during a program Saturday morning.

Participants then undertook a “give-back” woodworking project, constructing benches for the associations’ respective children’s camps. “While they were working on the benches, they were also talking about issues or concerns that they have about their condition,” says Angela Brown, the Midwest Hemophilia Association’s executive director.

The men heard from Perry Parker, a professional golfer living with hemophilia A, and got the chance to improve their strokes in a golf clinic under his guidance, before teeing off for nine holes of the sport. “Shared experiences and feeling part of something is crucial in this community, and this retreat makes that more possible,” one participant said. Learn more about the Gateway Bleeding Disorders Association and the Midwest Hemophilia Association: gatewaybd.org and midwesthemophilia.org

P H OTO S C O U R T E S Y O F C H A P T E R S .

NEBRASKA CHAPTER OF THE NATIONAL BLEEDING DISORDERS FOUNDATION AND BLEEDING DISORDERS OF THE HEARTLAND

COMMUNITY IN ACTION

G LO BA L FO C U S

GLOBAL GATHERING Participants connect and share knowledge from across the world.

WFH 2026 World Congress Set for Kuala Lumpur

G AV I N H E L L I E R / S TO C K S Y.

Malaysia will host the world’s largest bleeding disorders gathering in April 2026 A major event is coming to the global bleeding disorders community next year: the WFH 2026 World Congress, held by the World Federation of Hemophilia (WFH) and hosted by the Hemophilia Society of Malaysia. The event will take place April 19-22 and will be the most comprehensive global gathering in the field in 2026.

With a focus on innovation, scientific collaboration, and patient-centered care, the WFH 2026 World Congress promises to bring together health care professionals, researchers, patients, advocates,

and industry leaders from around the world. Over four days, attendees will participate in a dynamic program filled with scientif ic sessions, interactive workshops, advocacy panels, professional development tracks, and opportunities for global networking.

As was the case for the 2024 meeting — which welcomed 3,000 delegates from 135 countries — next year’s Congress will feature Medical and People with Bleeding Disorders tracks, as well as six specialized professional tracks: Dental, Laboratory Sciences, Musculoskeletal,

Psychosocial, Nursing, and Women and Girls with Bleeding Disorders.

The tracks will be designed to foster multidisciplinary approaches to care and encourage knowledge-sharing across specialties. Beyond the lecture halls, the Congress will also focus on empowering the global bleeding disorders community through patient engagement and advocacy. Sessions will highlight patient-focused care models, novel therapies, and strategies to improve access to treatment in underserved regions.

The Congress will have much to offer participants, including: Learn from the best. Gain firsthand insights into cutting-edge scientif ic research, clinical trials, and emerging therapies that are shaping the future of hemophilia care.

Contribute to the conversation. Present research, share practical experiences, and exchange knowledge on patient care and community engagement with peers from across the globe.

Collaborate with like-minded peers.

Build cross-border partnerships with researchers, advocates, and clinicians to tackle global challenges in access to care and equitable treatment.

Network with new and old friends.

Reconnect with longtime colleagues and forge new relationships with key opinion leaders, health care professionals, and community leaders.

Reflecting on the success of the 2024 Congress, Cesar Garrido, president of the WFH, shared the following words — words that are just as relevant now as we look ahead to 2026: “Organizers and participants both played an important part in creating a rich and nurturing environment that facilitated collaboration.

I know that the ideas and discussions that took place over the last three days will lead to breakthroughs in the future.”

Registration for the WFH 2026 World Congress will open in fall 2025.

Visit wfh.org/congress to find out more and to join their mailing list.

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COMMUNITY IN ACTION

P H I L A N T H R O PY

SERVING TOGETHER Andrew (left) with NBDF Board Chair Ryan Griffith and Board Secretary Paulette Bryant, M.D.

them light up as they realize, ‘I’m not on this journey by myself,’” he says.

Andrew has held several roles with NBDF over the years. He served as chair, treasurer, and member of the board of directors at large from 2007 to 2009 and again from 2013 to 2021. He is also a member of the Lee Ferguson Henry Society, NBDF’s planned giving program.

In 2024, Andrew was the honoree at NBDF’s Red Tie Soiree, and in August, he received the Philanthropist of the Ye a r aw a rd at t h e 2 0 2 5 B l e e d i n g Disorders Conference.

A VISION FOR THE FUTURE

Brian Andrew’s unexpected cause turned into a passion for service People are often surprised to learn that Brian Andrew, one of the National Bleeding Disorders Foundation’s most stalwart supporters, has no personal tie to bleeding disorders himself. After 25 years of involvement, though, he feels he is part of the community now. His involvement is driven by simple human bonds.

“We all have a connection to other people who are less fortunate than we are,” says Andrew, chief investment officer at Merit Financial Advisors. “It’s very simple from my perspective. If we’re fortunate, we need to give back to those who are less fortunate. For me that means those who are struggling with having a child who lives with these diseases,” Andrew says. “We all have an opportunity to share our time and talents with those in need.”

FROM FINANCIAL ADVISER TO LIFELONG ADVOCATE

Andrew has been committed to the bleeding disorders community since the late 1990s, when he worked with the Blood Center of Southeast Wisconsin. That experience led to helping a local chapter of NBDF with its financial goals.

“I learned more about the mission and what they were doing at that time, and one of the main focuses was camp for kids to help them learn how to infuse,” Andrew says. “ T hat ’s what got me hooked.” His involvement with the Great Lakes Hemophilia Foundation led to an introduction to the national organization.

“I came to realize that the disease consumes people’s lives. I’ve been to national conferences, and you’ ll meet a family who’s there for the first time and watch

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—By Beth Howard

“We all have an opportunity to share our time and talents with those in need.”

— BRIAN ANDREW

Your gift helps NBDF make sure that no one has to face their diagnosis alone: bleeding.org/give/give-now

I M AG E C O U R T E S Y O F B R I A N A N D R E W.

Working Toward a Brighter Future

Since 2022, Andrew has been founding chair of NBDF’s Pathway to Cures Investment Committee. This venture philanthropy fund invests in emerging biotech companies developing therapies for inheritable bleeding disorders.

It’s a role that Andrew relishes. “We’re at an amazing time in health care and bioscience, where the advances that we’re making are really signif icant and are resulting in therapies that no one could have envisioned 30 years ago,” he says.

“When people ask me how or why I have managed to stay involved with the organization as long as I have, the No. 1 reason is that I get a lot more back from doing it than I feel like I give,” he says.

“Every time you meet a family that has just learned that their child has hemophilia but then that burden gets lifted by this community, you can’t help but want to be involved.”

COMMUNITY IN ACTION

PIPELINE

Advances in Care for Glanzmann Thrombasthenia and VWD Clinical trial data shows promise for potential preventive therapies Hemab Therapeutics shared new data on two experimental treatments — sutacimig (formerly HMB-001) and HMB-002 — at the International Society on Thrombosis and Haemostasis (ISTH) meeting in Washington, D.C., in June 2025. Sutacimig is being developed as the first preventive treatment for people with Glanzmann thrombasthenia (GT), an ultra-rare inherited bleeding disorder. GT occurs when platelets don’t work properly due to a missing or faulty protein. This makes it harder for blood to

clot and can lead to frequent or severe bleeding. People with GT may experience mild-to-severe bleeding symptoms, some of which can be life-threatening if not promptly treated.

Current treatment for GT focuses on stopping bleeding once it starts, using drugs that slow clot breakdown, platelet transfusions, or a lab-made version of factor VIIa (FVIIa), a key clotting protein. Sutacimig is designed to work as a preventive therapy. It helps FVIIa reach the site of an injury so a stable clot

“We’re demonstrating the possibilities to meaningfully reduce bleeding and elevate care for people.”

— K ATE MADIGAN, HEMAB

C O S M A A N D R E I Z A L AU / S TO C K S Y.

THERAPY ADVANCES Innovative treatments aim to reduce bleeding.

can form, essentially making up for the body’s missing platelet function.

In a phase 2 study, people with GT who received sutacimig had more than a 50% drop in their annualized treated bleeding rate, with most side effects being mild or moderate. There were no reports of blood clots nor trial participants that needed to stop the treatment due to side effects.

HMB-002 is an experimental therapy for von Willebrand disease (VWD), the most common inherited bleeding disorder. It works by boosting levels of both von Willebrand factor and factor VIII — two proteins that help blood clot. Early studies in people with VWD showed that von Willebrand factor levels increased by more than 1.5 times within two weeks after a single dose of HMB002, an effect that lasted over time. The therapy is being studied to see if it can be used preventively for all types of VWD. “The data presented at ISTH underscore the potential for Hemab’s impact in addressing the severe unmet needs of people with bleeding disorders,” said Kate Madigan, chief medical officer at Hemab, in a news release in June. “Our sutacimig and HMB-002 data reveal important progress toward transformative, preventative solutions for these devastating diseases. We’re demonstrating the possibilities to meaningfully reduce bleeding and elevate care for people living with Glanzmann thrombasthenia and von Willebrand disease.”

Learn more about innovative therapies: bleeding.org/bleeding-disordersa-z/treatment/innovative-therapies

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COMMUNITY IN ACTION

Rare Diagnosis, Real Impact From running road races to helping pass a state law, I’ve learned that young people can be powerful advocates When I was 4 years old, I hemorrhaged after my tonsils and adenoids were removed and I was diagnosed with a qualitative platelet dysfunction. Later, a genetic test revealed my condition had never been seen or recorded in medical history.

We’ve tried all sorts of treatments, but nothing really works. I have to carry a medical bag at all times because I need

to be prepared. I get nosebleeds pretty often, especially when it’s humid out or if I have any sort of sinus infection. If a bleed lasts for more than 15 minutes, I take tranexamic acid pills, and if it continues for another 15 minutes or so, I have to call the hospital.

I’m unable to play many traditional spor ts, so running has become my

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exercise of choice. I’ve run the Falmouth Road Race in Massachusetts for the last four years to raise money for the New England Hemophilia Association. I also run a lot of 5Ks around my hometown of Connecticut for fun and to stay in good shape.

I’ve been lucky enough to have had a n i nc r e d ible e x p er ienc e w it h t he Wesleyan Universit y men’s lacrosse team. Team IMPACT, a national nonprof it, matches kids w ith serious illnesses or disabilities with college teams across the countr y. I work out w ith the team, have my ow n lacrosse jersey, stick, and helmet, and if you go to the website, I’m actually there, on the roster. Although it’s too dangerous for me to play in a game, I’ve gotten pretty good at passing and catching at practice, and I’m always cheering from the sidelines during the games.

P H OTO S C O U R T E S Y O F WAY LO N PAG E

MY JOURNEY

CHANGE MAKER Waylon with his parents, Sarah and Chris.

MAKING A DIFFERENCE

Although I do all I can to prevent bleeds, sometimes they’re inevitable. When I was in Georgia last year for a conference, I saw a bleeding control kit in the hallway. When we got back to Connecticut, I did some research, then contacted my state representative, Irene Haines, to ask her to submit legislation requiring bleeding control kits in Connecticut.

Turns out another representative, Liz Linehan, had been working on a similar bill, so we teamed up to create HB 7200, which requires bleeding control kits in public spaces and buildings across the state, promotes bleeding control training, and provides certification credit for first responders in Connecticut.

Recently, I testif ied in front of the Connecticut Public Safety and Security Committee, where I asked them to pass HB 7200. I was a little intimidated to

“If something is important to you, do your research, and don’t be quiet about it.”

— WAYLON PAGE

speak in front of such a big group, but I’m also pretty used to public speaking. I’m the president of our local 4-H club, and I have to speak in front of our group all the time. And as a club, we do a lot of public speaking.

Many kids think they ’re not capable of making change, but I’m proud of my involvement in HB 7200, which has just been signed into law by the governor. If something’s important to you, do your research, and don’t be quiet about it. Kids can make a difference.

Ad Index Novo Nordisk .

C2

SpeakYourHemTruth.com

Sanofi .

4 alprolix.com

Regeneron .

8-9

hemophilia-honey-b.com hemophilia-beyond-9.com

—By Waylon Page, as told to Leslie Pepper

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