2019 Annual Report

July 1, 2018 to June 30, 2019

The National Psoriasis Foundation is a nonprofit organization with a mission to drive efforts to cure psoriatic disease and improve the lives of those affected.

Welcome

On behalf of NPF, and all individuals living with psoriasis and psoriatic arthritis, we thank you for your generous support of our mission: to drive efforts to cure psoriatic disease and improve the lives of those affected. Thanks to your support, we set another record for the fiscal year that ended June 30, 2019, raising $14.2 million in revenue.

As our fiscal year ended on June 30, 2019, NPF also marked the end of the most ambitious strategic plan in our history. From FY 2015 to 2019, NPF raised more than $62 million in revenue, an increase of 56% over the prior five-year total.  As a result of this support from our generous donors, partners, and sponsors, the hard work of our health care providers and researchers – and, most of all, the commitment and generosity of our patient community – we made significant investments and advancements during the strategic plan period.

In this, the final year of the FY 2015 to 2019 strategic plan, we accelerated efforts through the following investments:

  • $2.8 million in research grants and fellowships, including six year-one awards for a new grant mechanism to support the development of a clinically applicable diagnostic test for psoriatic arthritis
  • $1.3 million to support national advocacy efforts, which led to the enactment of eight new laws protecting our community from the negative impacts of step therapy
  • $2.9 million in outreach, education and patient services to support people living with and managing these diseases
  • $618,000 in professional education to support medical professionals who care for people living with psoriatic disease

These investments, which would not have been possible without your help, include several years-long collaborations:

  • the release of joint psoriasis guidelines with the American Academy of Dermatology;
  • the release of joint psoriatic arthritis guidelines with the American College of Rheumatology; and
  • the launch of the LITE study with the University of Pennsylvania and University of Utah.

Today, good options exist to manage psoriatic disease. With your help, we are changing health care policies to make it easier to get the treatments needed to live free of the burdens of psoriatic disease. But treatments aren’t enough. You want a cure, and so do we. Your contributions play a direct role in making advancements in psoriatic disease possible. With your continued support, we will achieve our goals and continue to make a difference in the lives of people with psoriatic disease.

With appreciation,

Randy Beranek
President and CEO

Chip Newton
Chair, NPF Board of Directors

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Research

Cure symposium

The first NPF Cure Symposium, “The Future of Psoriatic Disease: Prevention, Precision Medicine and Cure,” was held May 30-31, 2019, at the Hyatt Regency in Seattle, Washington. The symposium brought together more than 120 participants, including expert clinicians, scientists from academic institutions and industry, and trainees in the field of psoriatic disease.

The symposium’s cross-disciplinary session highlighted the lessons learned from cure efforts in other disease fields, while interactive breakout groups worked to identify the current gaps in knowledge and resources needed to move toward a cure for psoriatic disease.

Medical programs

In July 2018, NPF was accredited with commendation – the highest level awarded – by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians through July 31, 2024.

This accreditation demonstrates NPF’s leadership in delivering high-quality CME programs that meet rigorous standards for educational excellence and independence.

In FY 2019, NPF offered 59 programs that served 810 medical professionals (711 attendees for CME programs and 99 for the annual Residents Meeting). NPF CME activities are designed to increase knowledge and improve the competence and performance of health care providers treating patients with psoriasis and psoriatic arthritis.

In addition to offering live CME activities and webinars, we also provide online journal CME through the Journal of Psoriasis and Psoriatic Arthritis, the peer-reviewed scientific journal published by NPF.

Signature events and offerings for medical professionals

  • Residents Meeting
  • Cure Symposium
  • Dermatology/Rheumatology Trainee Symposia
  • Advanced Practice Provider Psoriasis Recognition Education Program (A-PReP)
  • PsA Shared Management
  • Grand Rounds
  • Webinars
  • Podcasts
  • Journal CME
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Patient Navigation Center

The Patient Navigation Center provides free, personalized assistance to anyone impacted by psoriatic disease, including families and caregivers. Whether you were diagnosed yesterday or 20 years ago, whether you’re calling for yourself or someone you love, whether you’re looking for treatment information or help navigating insurance – NPF navigators answer questions and find solutions to help you live your healthiest life.

Regional Volunteer Conferences

We piloted three day-long conferences, each in a different region: West (Costa Mesa, California), Central (Chicago) and East (Alexandria, Virginia). Each conference brought local experts from outside organizations to foster conversations and inform participants on how to make a bigger impact in their local communities. Attendees also heard the latest on treatment and disease management from a local NPF medical board expert.

We also provided time for connection and socialization through a Cure Champion dinner, happy hour and run/walk.

The West RVC had 16 attendees (25% new to NPF), Central had 16 (44% new), and East had 25 (52% new).


Advocacy

NPF continues to make progress in improving access to care.

At the federal level, the government relations and advocacy team recruited two Senate sponsors for the Safe Step Act, Doug Jones (D-AL) and Lisa Murkowski (R-AK). We secured appropriations in the House for chronic disease education and awareness and reached 63 co-sponsors for H.R. 2077, the Restoring the Patient’s Voice Act.

We successfully engaged with the Department of Health and Human Services and one of its agencies, the Centers for Medicare & Medicaid Services, to influence health care regulatory policy, including a “fireside chat” with a top Administration health care policy official hosted by the NPF vice president of government relations and advocacy.

We hosted 32 attendees from 24 states to Washington for our 15th annual Capitol Hill Day. One patient advocate came all the way from Alaska. Our volunteers held over 60 meetings on the Hill with their elected representatives.

At the state level, we passed eight step therapy bills, in Delaware, Georgia, Maine, Ohio, Oklahoma, Virginia, Washington and Wisconsin, ensuring better access to care for more than 1.2 million of these states’ residents who are living with psoriatic disease. We also held 11 state advocacy days in 2019.


Team NPF

Team NPF is for anyone who wants to raise awareness about psoriatic disease and raise money to find a cure. Patients and their friends, families and colleagues walk, run, ride bikes and yell “Bingo!” You can join one of our scheduled events or create your own.

Participants come in all ages and sizes. Some of us have psoriatic disease and some of us don’t. One thing we all have in common: the desire to turn this disease into a footnote.

Highlights of Team NPF's year include:

Team NPF Run
Team NPF hosted 41 runners and walkers at the 2018 Marine Corps Marathon & 10K in Washington, D.C., raising $48,208.

Team NPF Cycle
Josh Stelter, Psoriatic Psuperhero, rode the 2018 RAGBRAI (the Des Moines Register’s Annual Great Bike Ride Across Iowa), raising $2,197 for NPF. 

Team NPF Walk
Of our almost 1,300 walkers, 205, or 16%, identified themselves as Psoriatic Psuperheroes (anyone living with psoriatic disease).

Pstamp Out Psoriatic Disease 
Team NPF Bingo changed its name to Pstamp Out Psoriatic Disease and expanded from 16 markets to 29.

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Commit to Cure Gala

On May 31, 2019, we held our national Commit to Cure Gala at the Hyatt Regency in Seattle, Washington. We gathered to recognize and celebrate rheumatologist Philip Mease, M.D., and his tireless efforts to support and help people living with psoriasis and psoriatic arthritis (PsA). The Commit to Cure Gala raised $600,000 to help fund the PsA Diagnosis Project.

In May, NPF, in conjunction with Psoriatic Arthritis Action Month, launched a campaign to highlight the effects of the disease and to outline the next steps for research. The PsA treatments we have today were barely a dream a generation ago. But curing PsA remains a dream. One big reason: the lack of a diagnostic test.

NPF launched the PsA Diagnosis Project to fill that gap. A diagnostic test will dramatically reduce the guesswork and the long delays in reaching a diagnosis and beginning treatment – delays that can cause years of pain and irreparable joint damage.

The Commit to Cure Gala was the culmination of the PsA Diagnosis Project campaign. NPF was proud to honor Mease, co-founder of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA), with a Lifetime Achievement Award. As chair of NPF’s PsA task force, Mease helps guide the organization’s focus and initiatives as we work to address the challenges that people with PsA face.


Financial Highlights

Balance Sheet

Form 990

Letter from the Treasurer

We are deeply grateful to you, our supporters, whose contributions enabled us to deepen our commitment to our mission during the fiscal year ending June 30, 2019. Once again, NPF was able to drive efforts to cure psoriatic disease and improve the lives of those affected because we received over $14 million in gifts, contributions and other support from individuals, companies, businesses and family foundations.

During 2019, NPF increased its level of investment in research grants and fellowships reaching a record level of $2.8 million, including launching six year-one awards for a new grant mechanism to support the development of a clinically applicable diagnostic test for psoriatic arthritis. We invested $1.3 million in advocacy to shape the laws and public policies that affect more than 8 million Americans living with psoriatic disease. We also invested $2.9 million in outreach, education and patient services to support people living with and managing psoriasis and psoriatic arthritis. Through new programs, activities and initiatives, we are reaching and serving more of our community than ever before. NPF continues to be fiscally sound, with $8.5 million in net assets.

NPF is a member of the National Health Council, which requires that all members maintain the highest standards of organizational effectiveness and public stewardship. These efforts are reflected in the 7th consecutive Charity Navigator four-star rating, an accomplishment realized by less than 3% of all rated organizations.

We are proud of NPF’s achievements, and we remain dedicated to our role as stewards of the funds entrusted to us.

Thank you for your continued generosity and faith in NPF.

Sincerely,

Eyal Ofir
Treasurer, Board of Directors

Recognition for fiscal responsibility
Charity Navigator, America’s largest independent evaluator of charities, awarded NPF its highest four-star rating for the seventh consecutive year – a distinction only 3% of charities have received.


Donors and sponsors

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Board members

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6600 SW 92nd Ave., Suite 300 Portland, OR 97223-7195
1800 Diagonal Rd., Suite 360 Alexandria, VA 22314

Call: 503-244-7404 | 800-723-9166
Text: 503-410-7766
Fax: 503-245-0626

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