State of NHF
A LETTER FROM OUR CEO & PRESIDENT, DR. LEN VALENTINO
2023 is an exciting year for NHF and the inheritable blood disorders community. In January, we kicked off our 75th anniversary – The Red Thread: Celebrating History, Hope, and Progress This momentous celebration will be a yearlong campaign where we reflect on the milestones and accomplishments over the last seven and half decades and look to the future as we expand and grow the community we serve. Want to learn how you can get involved or learn about our organization's history? Visit hemophilia org/75 today
One more special event to look forward to, the 75th Anniversary celebration will continue as NHF publicly reveals a rebrand that will introduce a new organizational name and logo that is inclusive of the entire community. You won’t want to miss this public unveiling at BDC! Have questions about the rebrand? Please email communications@hemophilia org
We look forward to celebrating these exciting milestones alongside you this year!
The latest in this month's issue:
STATE OF NHF
WASHINGTON DAYS
BDC TRAVEL GRANTS
BLEEDING DISORDERS
AWARENESS MONTH
NHF GO
UPCOMING EVENTS
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Washington Days
400 ADVOCATES RAISED THEIR VOICES IN DC FOR THE INHERITABLE BLOOD DISORDERS COMMUNITY.
Earlier this month, nearly 400 advocates from 45 states and Puerto Rico met with legislators to discuss the important policies affecting our community during NHF’s Washington Days This annual event is an opportunity for individuals living with an inheritable blood or bleeding disorder to share their personal story and advocate for support of federal hemophilia programs through the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration (HRSA).
And this year was more important than ever.
Insurers continue to create health plan strategies that create barriers to access for individuals with rare or chronic disorders These strategies put additional and unnecessary costs on individuals and families living with a rare disorder.
Without the advocacy of your fellow community members, harmful policies can bankrupt families. Your support helps us advocate beyond Washington Days to continue to fight for equitable, affordable, and life-changing treatments for our community
Check out Justin's Washington Days experience!
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"I found it extremely motivating and empowering. I got to speak for the voice of the community I serve. Even though I may not personally be directly impacted, I can carry that voice forward." -Justin
Did you know NHF offers travel grants to BDC?
OUR GOAL IS TO ENSURE EVERY PERSON HAS ACCESS TO THE EDUCATION AND CONNECTIONS THEY NEED TO THRIVE.
The Bleeding Disorders Conference (BDC) will take place from August 17-19 at National Harbor near Washington, DC. BDC is the largest of its kind in the United States and will feature a high-caliber educational program for key members of the inheritable blood disorders community: consumers and their caregivers, chapter leaders, health care professionals, and researchers.
Each year, NHF awards travel grants to ensure that all families have equitable access to the conference, regardless of their financial status.
We want to share the importance of bringing our community together to make connections and learn from each other People like Shatara experienced symptoms for 16 years before being diagnosed with Factor VII deficiency. She was the only person in her family to have Factor VII.
Along with the educational opportunities BDC provides, the conference is also a place to connect and build relationships with the community As William’s mom said, “The conference allows us to have a human experience, we can connect with other people in the community, and we have the support of other people who experience inheritable bleeding disorders.”
Your generous support helps families living with an inheritable blood disorder build lifelong connections at BDC.
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“I am still learning, it’s still new to me, and I don’t know too much about it,” she said. And while Shatara has had FVII deficiency for several years, processing the diagnosis can still be a challenge."It’s still hard. I get emotional seeing bruises across my body and still must deal with the heavy bleeding.”
Bleeding Disorders Awareness Month
OUR COMMUNITY SHOWED UP TO RAISE AWARENESS FOR INHERITABLE BLOOD DISORDERS!
Each March, NHF calls attention to inheritable blood and bleeding disorders during Bleeding Disorders Awareness Month. This month lets patients and families with hemophilia, von Willebrand disease, rare factor disorders, and more, share their lives, stories, struggles, and successes Thank you for raising your voice to help us start the conversation about what life is like living with a rare disorder.
Our community helped “start the conversation” d i d i l t d t
Our work doesn't stop when March is over Help us continue to work toward equitable access to treatment and care for all people living with an inheritable blood or bleeding disorder.
Thank you for your support and commitment to the inheritable blood and bleeding disorders community It’s because of you that individuals and families can thrive.
For more information on how you can advocate all year long, visit hemophilia org/BDAM
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NHF GO UPDATE
DID YOU KNOW YOU CAN GET ACTIVE TO RAISE AWARENESS FOR THE INHERITABLE BLOOD DISORDERS COMMUNITY?
Throughout the month of March, NHF GO's annual virtual event, Run Red, brought together participants from across the country in celebration of Bleeding Disorders
Awareness Month and NHF’s 75th Anniversary. Together we ran, walked, and cycled distances ranging from a 5K to a full marathon. Our thanks and gratitude go out to everyone who participated, donated, and supported- you made Run Red a success!
While our Run Red participants ran, walked, and biked from their local communities, our team of Red Tie Runners took the streets of NYC on March 19th for the 2023 United Airlines New York City Half Marathon For months leading up to the event, the runners trained and fundraised with the inheritable blood and bleeding disorders community at the forefront of their minds. Huge thank you for your dedication, strength, and commitment! Learn why some of our runners joined Team NHF:
“I'm a practicing pediatric hematologist and the Director of Pediatric Hemostasis & Thrombosis at the Hemophilia Treatment Center of Levine Cancer Institute and Levine Children's Hospital in Charlotte, NC. My passion for the bleeding disorders community doesn't stop at the doors of the hospital! I am honored to put my energy toward training for a half marathon in honor of persons with bleeding disorders.”
- Brendan
Interested in becoming a Red Tie Runner? We have a spot for you in the 2023 TCS New York City Marathon! Email Riley Breen, Development Specialist, at rbreen@hemophilia.org to learn more.
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“I think this is a great opportunity to inform other community members about the importance of contributing to a great organization that gives so much back to the bleeding disorder community.”
– Gabriela
Upcoming Events
WE INVITE YOU TO JOIN US AT ONE OF OUR UPCOMING EVENTS.
Nominate someone for an Award of Excellence
Each year, the Awards of Excellence program at BDC recognizes individuals who have made a significant difference in our community. Nominate someone by May 5th to recognize their impressive service and dedication toward the inheritable blood and bleeding disorders community. Learn more here.
Mark Your Calendar
More details coming soon.
May: No Limitations Field Day Event.
Participate from your local community.
August 17-19: Bleeding Disorders Conference in National Harbor, Maryland
October 27: Red Tie
Soiree gala in Chicago, Illinois
Celebrate World Hemophilia Day!
On April 17th, we join the global inheritable blood disorders community in celebrating World Hemophilia Day! We strive for a world with better treatments and cures for those living with an inheritable blood disorder, and we can achieve this by ensuring equitable access to care and investing in transformative research.
This year, we are asking you to join us by starting an online Unite Your Way fundraiser to support our community. BONUS: Raise $100 between April 1st and April 17th and you’ll receive a pair of custom NHF Nike Sneakers!
We celebrate World Hemophilia Day together as a community, so grab your friends, family, and neighbors and join us!
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