The Assistance Fund (TAF) 2020 Impact Report

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To provide underinsured people living with life-threatening, chronic, and rare diseases access to critical treatment through financial assistance, education, and advocacy.


The Assistance Fund envisions the day when no one goes without treatment because of an inability to pay.




Message From the President and CEO


Message From the Board Chair














2020 Financials


2020 In Numbers


Ways To Give

Message From the President and CEO

A few years ago, I attended a meeting where a guest speaker discussed organizational culture using the Ritz-Carlton’s famous “gold standards” as a case study. A two-time Malcolm Baldridge National Quality Award winner, the Ritz-Carlton hotel chain is world-famous for providing exceptional service, and its gold standards encompass the values and philosophy by which the multi-million-dollar hotel brand operates. These standards permeate Ritz-Carlton’s culture; employees recite the standards from memory and are guided by them in every aspect of their job, at all levels of the company. Ensuring its gold standards are at the forefront of every employee’s mind is a key factor in RitzCarlton’s impeccable reputation for topquality service and its continued success as a leader in the hospitality industry. I was inspired by Ritz-Carlton’s unwavering commitment to providing best-in-class service. And I knew that The Assistance Fund (TAF) could be the Ritz-Carlton of the independent charitable patient assistance world. That is how our values initiative was born. TAF’s senior leadership identified six values that define TAF’s culture: people,

recognition programs to team-building events, all with a focus on these values.

passion, innovation, transparency, advocacy, and excellence. And in summer 2020, we launched TAF’s values organization-wide, with the goal of making them an integral part of TAF’s DNA. Now, we reference our values when we hire new employees, conduct performance reviews, kickoff team meetings, and plan our latest projects. The TAF values adorn the walls of both our Orlando and Washington offices and the backgrounds of every employee’s computer. Our Values and Culture Committee meets monthly to plan initiatives ranging from employee

This year’s Impact Report highlights TAF’s important moments and accomplishments in the framework of our values. 2020 was an incredibly memorable year that tested our mettle as an organization. I am tremendously proud of how the TAF team adapted to the rapidly changing circumstances of the COVID-19 pandemic, and how they continued to serve our patients without disruption. From launching our Provider Portal and disease program waitlists, to forging partnerships with patient organizations to advocate on behalf of our patients, to supporting crucial research on cell gene therapy, we have much to celebrate. Finally, I want to thank our incredibly generous donors, who donated $381 million to TAF this year. Our work would not be possible without their support and we are immensely grateful. On behalf of the entire TAF family and the patients we serve, thank you.

MARK P. MCGREEVY President and CEO

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Message From the Board Chair When COVID-19 achieved the level of a pandemic in early 2020, the healthcare world was turned upside-down. Frontline healthcare employees worked tirelessly to save lives as their emergency department hallways overflowed with infected patients. As infection rates skyrocketed throughout the country, The Assistance Fund (TAF) family grew increasingly concerned about the patients it serves, who are particularly vulnerable to the effects of the virus. The objective was clear: to ensure people living with life-threatening, chronic, and rare diseases continued to receive their critical treatment, without disruption. Since 2009, the TAF team has consistently demonstrated its commitment to its mission of providing underinsured people living with life-threatening, chronic, and rare diseases access to critical treatment through financial assistance, education, and


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advocacy. And 2020 was no different. When it was evident that the best way to keep employees safe was to move to a remote working environment, leadership quickly transitioned the Orlando and Washington, DC, offices to a virtual workspace, including the 32-person call center team. Thanks to the immense dedication and professionalism of TAF’s employees, the shift was seamless for the patients we serve. As the Board Chair of a nonprofit organization weathering the storm of a pandemic, I would have been beyond satisfied if all TAF accomplished in 2020 was to continue serving the patients who need it most. But despite the hurdles presented by the pandemic, 2020 was a year of several notable milestones for TAF. On the advocacy front, TAF established three key partnerships with prominent patient groups, launched an Advocacy Com-

mittee to help determine and advance its advocacy initiatives, and commissioned its first white paper on the importance of cell gene therapies for the rare disease community. In a continued effort to streamline patients’ and providers’ user experience, the operations team launched disease program waitlists and a new online Provider Portal. And with compliance and transparency a constant focus of TAF’s operations, TAF hired a Senior Director of Compliance and Medical Affairs and established an Executive Compliance Committee to execute its extensive compliance program. Most important, TAF assisted a record 59,402 patients and added 12 new disease programs to its portfolio, all while maintaining exceptional national recognition from GuideStar, GreatNonprofits, The Nonprofit Times, and—for the first time— Forbes’ annual Top 100 Charities list. I am tremendously proud of TAF’s dedication to its patients during a time of crisis. And I have a renewed confidence in TAF’s ability to carry out its mission under any means necessary, with the paramount goal of seeing the day when no patient goes without treatment because of an inability to pay.

LAWRENCE HATCH Chair, Board of Directors

PASSION Our passion for our mission is central to everything we do. has a very unique sense “ofTAFcamaraderie and family — it’s a true team environment. ” — TARAY WHITE

Passionate About Our People We know that when our employees feel appreciated and empowered, the people we serve will, too. Our passion for our mission, and our employees, is central to everything we do. Meet TaRay White, Manager of Quality Assurance and Claims Management, and Daniel Nieves, Manager of Operations – Contact Center. Both TaRay and Daniel began their TAF careers as Patient Advocates, the people behind our best-in-class experience. TaRay and Daniel’s commitment to TAF’s mission, professionalism, and ability to foster a patient-focused

“for five years and started as

I have now been with TAF

a Patient Advocate. I worked my way up by proving how dedicated I was to our patients. — DANIEL NIEVES


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working environment stood out to TAF’s senior leadership. When promotional opportunities were available, both TaRay and Daniel were at the top of the list. “About a year into my job as a Patient Advocate, the then Operations Manager transitioned out. I was asked to apply and

was able to solidify the position, which I was very excited about.” — TaRay White “I have now been with TAF for five years and started as a Patient Advocate. I worked my way up by proving how dedicated I was to our patients.” — Daniel Nieves

years, each of them has spoken with thousands of patients who needed financial assistance to access their critical treatment for a life-threatening, chronic, or rare disease. Both team members say the best part of their jobs is the joy of knowing they are making a difference in

TAF’s family-like culture makes staff enthusiastic about coming in to work every day. We prioritize teamwork and celebrate each other’s successes at all-staff events and in our quarterly newsletters.

people’s lives.

“TAF has a very unique sense of camaraderie and family – it’s a true team environment.” — TaRay White

verge of losing their home. But when we

“One moment that stands out was a patient call during my early years at TAF. They were distraught and in need of this lifesaving medication. They said they were on the enrolled them that same day, they cried, saying it was the first good news they’d

“Working at TAF has been such a rewarding experience for me. It’s rare to come across a company that truly stands by its values and goes above and beyond to care for its patients and employees.” — Daniel Nieves

received in a while and, thanks to us, things

TaRay and Daniel have a combined 13 years of experience at TAF. Over those

what we did five years ago is what we’re

were starting to look up.” — Daniel Nieves “The value I most identify with is passion. It’s exciting that we continue to grow and are always moving forward. I don’t feel like doing now.” — TaRay White

INNOVATION We continually develop and support new and pioneering solutions to ensure we provide the highest quality service. This year, we implemented three core initiatives to enhance service for our patients and providers:

Implementing Disease Program Waitlists


listened. We understand how stressful

Launching a Provider Portal

TAF has been a very fun experience. I love when patients tell me how

we make their life easier.

— WILLIE MACON Supply Chain Fulfillment Specialist


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At TAF, we are committed to providing industry-leading technology with streamlined processes for providers and patients. We want to ensure everything from the application process to receiving reimbursement is a seamless experience. That’s why in summer 2020, we launched the TAF Provider Portal: a one-stop-shop for providers to see up-to-date information on their patients, view our full list of disease programs and accompanying FDA-approved treatments, and send questions to our team. So far, over 1,000 providers have registered on the Portal and the number continues to grow each week.

The patients we serve asked and we it is for patients to learn that we offer a disease program for their diagnosis and then find out that the program is currently at capacity. In July 2020, we launched our new disease program waitlists, which allow patients to enroll on a first-come, firstserved basis when new funding becomes available for a disease program that was previously at capacity. The new waitlist technology allowed us to both enhance our communications with patients and ensure that we can provide them with the assistance they need as soon as it becomes available.

Partnering With Nonprofit Organization Lighthouse Works for 2021 Reenrollment Every year, the TAF team holds strategy sessions to brainstorm ideas about how we can enhance the annual reenrollment experience for our patients. This year, we expanded our service team by partnering with the Orlando-based nonprofit organization Lighthouse Works, whose mission is to create job opportunities for blind and visually impaired people in Central Florida. Known for its excellent customer service, Lighthouse Works has assisted organizations like the Florida Department of Economic Opportunity, Universal Orlando Resort, the Walt Disney Company—and many more. The partnership allowed us to reduce hold times on the telephone, handle more calls, and improve our internal service levels while supporting an important Central Florida organization.

In a survey of Provider Portal users:

83% said they fre-

quently use the Portal.

than 70% said their primary use was to check the status of their patients.

• More

I was drawn to TAF as an organization

that is known for its values and commitment to providing financial assistance to underinsured patients. I am so excited to be part of a team with such generous donors and caring providers.


At TAF, transparency and compliance are more than just words, they are cornerstones of our organization. Below are two of our top 2020 compliance initiatives:

Judith Fox, Senior Director of Compliance and Medical Affairs

Governance & Oversight

TAF’s Executive Compliance Committee

Written Guidance

This year, TAF established an Executive Compliance Committee, which meets quarterly to manage and administer

Enforcement & Exclusions Screening

In December 2019, TAF hired Judith Fox, Senior Director of Compliance and Medical Affairs, to oversee our comprehensive compliance program, which helps us to ensure we are operating in full compliance with the laws, regulations, and policies that govern independent charitable patient assistance organizations. Judith ensures transparency is front and center in the minds of all TAF employees and that we are adhering to these legal and regulatory requirements. In summer 2020, Judith oversaw the launch of TAF’s enhanced employee compliance


the Compliance Plan. The Committee monitors and develops internal systems

Compliance Best Practices

and controls to ensure TAF’s adherence to federal guidance, including its Advisory

Investigations & Corrective Action

Communication Auditing & Monitoring

Opinions from the U.S. Department of Health and Human Services Office of the Inspector General, as well as organizational standards, policies, and procedures.

training curriculum, a reflection of our commitment to the highest standards of ethics, integrity, and accountability. And as a key member of TAF’s Values and Culture Committee, Judith is committed to making compliance a central focus at every level of our organization.

In an effort to continually enhance our compliance program, each year, the Committee will review TAF’s Compliance Plan to determine how it could be enhanced. Transparency. Compliance. Accountability. We strive to be the industry leader in implementing best practices.

TRANSPARENCY We make transparency a priority and are accountable and open in all our business practices.


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PEOPLE We put people above all else. Each person enrolled in our disease programs has a unique story. And we are continually inspired by their strength and resilience.

SUSI Primary Biliary Cholangitis Susi didn’t always have the travel bug. She moved to Boston from Connecticut in the 1970s as an art student. Forty years later, Beantown is still home. “Through work, I’ve been to Australia, the United Kingdom, and Chile,” Susi said. “And I did a global teacher conference in Costa Rica. That was so much fun!” On top of the world-class travel, Susi’s job also provided her with excellent health benefits. It wasn’t until her health insurance changed in March 2020 that Susi realized how expensive her primary biliary cholangitis (PBC) medications were.


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“I took for granted my monthly $30 copay,” she said. “Without my job, I didn’t know what to do.” When Susi’s liver numbers spiked several years ago and she was diagnosed with PBC, her doctor suggested Susi contact TAF’s Primary Biliary Cholangitis Financial Assistance Program. “It just took a load of pressure off of my shoulders,” she said. “If it weren’t for TAF, I would have had to stop taking my medication.” For her 60th birthday, Susi finished an 80-mile bike ride in Vermont, cycling alongside women half her age. “Thanks to TAF, I can continue following my passion,” Susi said.

BEN Lambert-Eaton Myasthenic Syndrome With mountains and trails all around, Ben considers Oregon—his home of more than 40 years—the perfect place to relax and enjoy his retirement with his wife. “The simple things in life are most important,” Ben said. “It really comes down to loved ones and the beauty of Mother Nature.”

GRAYSON Infantile Spasms

About 10 years ago, Ben began feeling unwell. He had aches and experienced double vision. When his doctor diagnosed him with Lambert-Eaton myasthenic syndrome (LEMS), Ben needed it repeated—he had never heard of it.

The birth of a new baby is an exciting time. When Grayson was born in March, Stephanie and her husband Matt were overjoyed. But when they brought Grayson home from the hospital, they knew something was not right.

“I didn’t know what I would do,” he said.

“We noticed some eye rolling and head dropping,” Stephanie said. “There were red flags.”

Ben’s pharmacist referred him to TAF’s Lambert-Eaton Myasthenic Syndrome Financial Assistance Program. “Because of TAF, I can continue living in my home without worrying about how I will pay the mortgage,” Ben said. “I couldn’t possibly afford my treatment without TAF.” Whether volunteering or reviewing scholarships at a local community college, Ben remains active in the community. And now he has peace of mind. “TAF is a reminder that there are a lot of good people out there,” he said.

The doctors soon diagnosed Grayson with infantile spasms, a rare disease that affects babies in their first year of life. When Stephanie heard how much Grayson’s treatment would cost, she knew it was out of reach for their family. “The cost of treatment is like another mortgage,” she said. “My husband has a decent job, but the insurance is still expensive. The financial burden was so much.”

Their case manager at the hospital suggested they apply to TAF’s Infantile Spasms Copay Assistance Program. “It was such a weight lifted off of our shoulders,” Stephanie said. “It’s a miracle TAF exists.” Stephanie took a leave of absence from her job as a speech therapist to care for Grayson. She also began to document her family’s journey on a blog she hopes Grayson will one day read. “It all started as a letter to him,” Stephanie said. “By connecting with other families, we don’t feel like we’re in this alone.” Now Stephanie is preparing to get back to work and enjoy watching her kids grow. “We’ve been taking it day by day, moment by moment,” Stephanie said. “TAF has been such a help for our family in every way.”

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EXCELLENCE We strive for excellence in every aspect of our operations.

“ During that time,

TAF made me feel like

I could take a breath for a minute. It was beyond helpful in a dire time.



“ When we found out that I got that grant

we were jumping up and down. It was the most unbelievable feeling.



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TAF Nationally Recognized as Leading Charity

with life-threatening, chronic, and rare diseases access their critical treatment.

to bring a sense of calm to our patients amid the global crisis.

When patients interact with TAF, they come with high expectations. From our commitment to best-in-class technology to our warm and knowledgeable Patient Advocates, we strive for excellence in every aspect of our operations. In 2020, we were proud to receive several national awards recognizing TAF as a charitable leader, including another GuideStar Platinum Seal of Transparency, being named a “Top 100 Charity” by the NonprofitTimes, and being named a GreatNonprofits top-rated nonprofit. And for the first time, TAF was listed in Forbes’ Top 100 Charities For 2020 list, ranking number 43.

Early Preparation Helps TAF Deliver During Global Pandemic

As the numbers of people infected skyrocketed, we knew the people we serve—many of whom are immunocompromised—would be disproportionately impacted by COVID-19. Beyond ensuring that they continue to receive access to their critical treatment, we wanted to make sure those who experienced job loss or furlough would not lose access to their health insurance.

As TAF continues to grow, our commitment to the people we serve remains central to all we do. We are deeply grateful to our generous donors and hardworking TAF employees who, since 2009, have helped us serve nearly 135,000 underinsured people living

When news that a deadly new virus— COVID-19—was circulating in the U.S., TAF’s early preparations enabled us to provide reassurance to the thousands of people who rely on us. As a Florida-based organization, we are accustomed to preparing for hurricanes each year and quickly adapting for potential disruptions in service. And in early 2020, we began to stock extra laptops at our headquarters. By the time lockdowns began in March, we were able to seamlessly transition our employees, including our call center, to telework. Our message to patients was clear: You have TAF. Our IT team’s careful planning and investments in digital infrastructure and cloud-based technology allowed us to avoid any disruption in service. And our best-in-class Patient Advocates continued

In April, we launched a new program for our patients who experienced a disruption in their insurance coverage due to the pandemic. The COVID-19 Health Insurance Assistance Program (COVID-HIAP) provides immediate financial support by offering grants of up to $2,500 to help them secure health insurance.

ADVOCACY We fiercely advocate on behalf of our patients to ensure they don't go without treatment because of an inability to pay.

“ Having had a front row seat in the evolution of healthcare

policy over the last 30 years, I know how critical it is that patients have a voice. TAF is a megaphone for that voice. I’m proud to be helping this team protect access to

treatment that changes lives.


Too many patients are unable to bridge the gap between what treatment costs and what they can afford. That’s why we opened our Washington, DC, office in 2019 to: • Be a leader for patients by collaborating

with other health and healthcare organizations to devise innovative solutions to current and future healthcare challenges. • Put patients at the center of policy-

making efforts by elevating their voices through education, training, and direct engagement with policymakers. • Identify patient challenges through

consistent outreach and engagement with individual patients and with broader patient populations through advocacy groups. • Promote pro-patient policies that

improve patient access to clinical care,


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diagnostics, therapies, and treatment that offer an improved quality of life.

2020 ADVOCACY INITIATIVES: Forming Effective Partnerships: We know that collaborating with leading patient organizations broadens our reach and deepens our impact. To facilitate forging those important partnerships, in July 2020 we welcomed Stephanie Marshall as Director of Patient Advocacy. And thanks to the dedication of our Advocacy Team, we established three important partnerships in 2020 with the following groups: • EveryLife Foundation, a nonprofit

advocacy organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable develop-

ment of and access to lifesaving diagnoses, treatments, and cures. TAF belongs to the EveryLife Community Congress and supports the Rare Disease Week on Capitol Hill program. • Global Genes, a nonprofit organization

that connects, empowers, and inspires the rare disease community, with the ultimate goal of eliminating the burdens of rare disease for patients and families everywhere. • MapRx Coalition, a coalition of patient,

family caregiver, and health professional organizations committed to safeguarding the well-being of patients with chronic diseases, and disabilities who rely on Medicare’s prescription drug coverage, Medicare Part D. continued



Facilitating Crucial Research: TAF is committed to ensuring patients’ access to all FDA-approved treatment, including transformative therapies entering the market and those coming in the future. With sixty-two percent—nearly two thirds—of our disease programs representing rare diseases, we want to ensure policymakers understand the importance of cell and gene therapies (CGT), which are potentially transformative for the rare disease community. In July 2020, we commissioned our first white paper, “New Cures & Innovative Care for Medicaid Patients: Examining Challenges and Opportunities for Cell and Gene Therapies in Medicaid.”

The paper provides in-depth analysis of the challenges in CGT coverage and payment in Medicaid, as well as opportunities for improvement. Its proposed recommendations to improve access to and sustainability of Medicaid coverage of CGT are based on a comprehensive landscape assessment and interviews with over 45 expert stakeholders, including state Medicaid directors and experts,

healthcare providers, patient advocacy groups, Medicaid health plans, federal policymakers, manufacturers, and more.

Establishing Strategic Advocacy Committee: To ensure we are effective in carrying out our value of fiercely advocating on behalf of our patients to ensure they don't forgo treatment because of an inability to pay, in spring 2020, we created an Advocacy Advisory Committee comprising patient advocates, policy experts, and public affairs professionals who share a commitment to ensuring patients have access to diagnosis, treatments, therapies, and clinical care. The Committee provides expert input to assist TAF’s executive management team in determining and advancing its strategic advocacy objectives. Kristen Morris, Senior Vice President and Chief Government Relations Officer for Atrium Health, chairs the Committee.

Making Connections at Rare Disease Week: Meeting face to face with the patient community is critical to informing our advocacy work. For the first time, TAF participated in

Rare Disease Week 2020 in Washington, DC, which provided an important opportunity to strengthen our connection to the rare disease community. In addition to exhibiting, we hosted a reception convening advocates, patients, and their families. The event was an opportunity to educate participants about independent charitable patient assistance organizations and our work to help rare disease patients access critical treatment and to introduce TAF as an important new presence in Washington.

Rare Disease Week 2020, Washington, DC

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FINANCIALS Financial assistance provided:



TOTAL Expenditures:

$328,628,249 Program Services


Dollars raised:




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$7,614,404 Fundraising



of expenditures are directly associated with patient assistance


calls received

online chats handled


530,000 claims paid


(TAF provides assistance to people in D.C., Guam, the U.S. Virgin Islands, and Puerto Rico)

Average number of claims submitted per patient:


Average total assistance per patient: States where we provided assistance:


Team of Patient Advocates:



new disease programs


(including 5 who are bilingual)

patients assisted

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WAYS TO GIVE MAIL: Download, print, and

Thanks to your tremendous generosity, The Assistance Fund’s (TAF’s) Individual Giving Program continued to grow despite the challenges of 2020. From 2019 to 2020, the number of TAF’s individual donors increased by %, and individual gifts increased by %.

complete the Giving Form from the “Other Ways to Give” page on the TAF website and mail it to: The Assistance Fund, 4700 Millenia Blvd., Suite 410 Orlando, Florida 32839.

Your donations are more important than ever as patients’ need for financial assistance for their out-of-pocket cost for treatment continues to grow. You can specify that your gift go to one of our more than 70 disease programs

SOCIAL MEDIA: Donate to TAF through our Facebook page by clicking the “donate” button at



or give an unrestricted gift, which allows us to direct the monies toward the greatest need. Ninety-three cents of every dollar you give goes directly to patient assistance, and all gifts are tax-deductible.

TAF’S CHAMPION PROGRAM: TAF’s Champions are our most committed donors. Through a monthly commitment, our Champions provide crucial, consistent funding so that we can continue to help thousands of people who desperately need it. Learn more at monthly-donors/.


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O NLINE: Go to donate to donate directly through our website. You can also donate in honor or loving memory of someone.

PHONE: To donate over the phone, please call (855) 421-4610 to speak with someone from our Philanthropy Department.

PLANNED GIVING: Leave a legacy and make a lasting impact by including The Assistance Fund in your estate plans. Visit https://tafcares. and choose the giving option that works best for your goals.

EMPLOYER MATCHING: Double your impact. Many employers will match taxdeductible charitable contributions made by their employees, retirees, and employees’ spouses. Ask your current employer about this opportunity to support a worthy cause.

TAF’s generosity renewed my faith in people. I can’t say enough good things about them.

—BRAD, Pulmonary Hypertension

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There is a very recognized

spirit of wanting to be helpful. They are a complete blessing.

—LUKE, Hereditary Angioedema

NATIONAL RECOGNITION In 2020, TAF received a perfect 100/100 rating in Finance & Accountability and Impact & Result from Charity Navigator and ImpactMatters. In January, TAF was once again named by GreatNonprofits as a top-rated nonprofit and has a GuideStar Platinum Seal of Transparency. And, for the first time, TAF was named in Forbes' Top 100 Charities For 2020 list, with an efficiency rating of 100%.











Lawrence Hatch, Chair John Fraley, Vice Chair Jeff Milford, CFA Justin Aronson, JD Julie Judge Ellen Feinstein, RD, MHA, FACHE Kristen D.W. Morris MEDICAL ADVISORY BOARD

Robert Bermel, MD Thomas Fountaine, MD Brian Rini, MD, FASCO SENIOR LEADERSHIP

Mark P. McGreevy, President and CEO Steve Alsene, CFO Gerald Lauria, VP, Business Development and Strategy Danielle Vizcaino, VP, Operations John D’Angelo, VP, Business Intelligence Christina Hartman, VP, External Affairs Judith Fox, Senior Director, Compliance and Medical Affairs

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ORLANDO HEADQUARTERS 4700 Millenia Blvd., Suite 410 Orlando, FL 32839

WASHINGTON, DC, OFFICE 655 15th St. NW, Suite 502 Washington, DC 20005

TEL: 855.845.3663 PATIENT FAX: 833.865.3757 BUSINESS FAX: 855.430.0590 M-F, 9 a.m.–6 p.m. ET

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