We are just a month away from the CSD's big Hill Day event in Washington, D.C. (May 18 - 20) and can hardly wait to advocate on behalf of the 84 million Americans with a skin disease!

Now , more than ever, we need to come together as ONE VOICE to tell our elected officials about the impact of skin disease and what we need as the dermatology patient community. Our collective voice ensures that we, as a skin disease community, have a seat at the policy-making table. And there is much work to be done in bringing education and awareness of skin diseases to the nearly 100 newly elected Members of Congress and their staffers!

In addition to meeting with legislators to discuss the CSD's legislative and policy priorities, we'll conduct advocacy training and will be hosting a congressional briefing entitled “Skin Disease: How Science, PBMs, and Access to Care are Impacting the Lives of 84 Million Americans."

Please see below for more information about the congressional briefing and our amazing speakers! We're grateful for our Hill Day participants' enthusiasm to share their stories and to be a voice for the often voiceless 84 million Americans with a skin disease. Together, we can and will affect positive policy change!

Here's a preview at what you'll find in this month's newsletter:

• Congressional Briefing Invitation - please share wide and far with your networks!
• Upcoming Conferences - Society for Investigative Dermatology - May 7 - 10
• Legislative and Policy Updates
• Sharing Your "Superpowers" With the Skin Disease Community
• April is Sarcoidosis Awareness Month
• Skin in the News

CSD Hill Day Congressional Briefing

The CSD is thrilled to announce its amazing lineup of speakers at the CSD Hill Day Congressional Briefing in Washington, D.C.! The briefing, held on Tuesday, May 20 from 12PM - 1PM in the Cannon Caucus Room of Capitol Hill, will feature inspiring skin disease patient advocates and prominent researchers and providers. This is an incredible opportunity to educate and bring awareness of skin disease to Members of Congress, their staffers, and federal agency employees. Please share this invite far and wide with your networks!

We're thrilled to have the Dermatology Nurses' Association with us providing free skin checks on the Hill for Members and their staff as part of the event.

Personal Story Submissions for

CSD's 2025 Hill Day

In preparation for the CSD Hill Day 2025, we ask you to identify a patient advocate within your organization who is willing to share their personal story. This patient advocate will be asked to provide a written one-page document about how their skin disease impacts them and how certain legislation can lessen the burden of their disease. If you happen to be a patient yourself, please consider sharing your personal story!

These one-page documents will be featured on the CSD website to serve as a reference for other advocates to draft their stories and will used by participants of the CSD Hill Day during meetings with legislators and staff. To learn more, see examples, and find out how to submit a story, please see here.

The CSD will be exhibiting at the Society for Investigative Dermatology (SID)'s 2025 Annual Meeting in San Diego, CA from May 7 - 10, 2025! The SID is the pre-eminent scientific and research organization in the world. Join us and others in the field of dermatology research to network and gain access to world-class educational content and innovations in both in-person and virtual meetings. Visit the Annual Meeting website where updates will be posted.

CSD Sends Letters with Fiscal Year 2026 Funding Requests

The CSD recently sent the House and Senate Appropriations Subcommittees on Labor, Health and Human Services, Education, and Related Services letters with its Fiscal Year 2026 funding requests. The CSD also signed onto an Ad Hoc Group for Medical Research coalition letter to Congress - alongside more than 500 additional organizations! - with FY26 funding requests. Both letters' requests align with one of the CSD's top legislative priorities in the 119th Congress -- robust funding of the NIH.

The Ad Hoc Group coalition letter states that "Robust support for medical research makes Americans healthier. Patients across the country -- from urban centers to rural communities -- benefit from medical research supported by the NIH, which serves as the foundation for nearly every preventive intervention, diagnostic, treatment, and cure in practice today."

CSD Sends Letter to the United Nations in

Support of the Skin Diseases Resolution

As part of a global effort, the CSD recently sent a letter to the United Nations in support of the Skin Diseases Resolution. Skin diseases affect over 4.69 billion people globally, making them one of the top 10 causes of disability. From eczema and psoriasis to rare genetic conditions, skin diseases have devastating impacts on individuals’ health, mental well-being, and livelihoods.

The World Health Assembly (WHA) will meet in May 2025 to adopt a groundbreaking resolution to prioritize skin health as a global health issue. This resolution proposes to:

• Establish a WHO Global Action Plan for Skin Diseases.
• Invest in training healthcare providers to diagnose and manage skin diseases effectively.
• Strengthen diagnostic capacity and surveillance for skin diseases. 
• Promote multidisciplinary skin diseases research on new diagnostics and affordable treatments and ensure their equitable access. 
• Advance research into social and economic impacts of skin diseases.
• Support integrated and holistic action on skin diseases to support patients’ needs including their mental well-being.
• Strengthen healthcare systems and improve health equity.

Join us in advocating for this crucial resolution!

1. Share your support on social media using #SkinDiseasesResolution.
2. Contact your Minister of Health and urge them to endorse this resolution.
3. Learn more about the WHA Resolution for Skin Diseases by visiting https://globalskin.org/WHAResolution

Together, we can build a future where no one is left behind due to skin diseases.

U.S. Senators Hold Forum on Funding Cuts to the National Institutes of Health



On March 26, Senators Tammy Baldwin (D-WI) and Peter Welch (D-VT) held a forum entitled “Cures in Crisis: What Gutting NIH Research Means for Americans with Cancer, Alzheimer's, & Other Diseases.” The forum’s participants included U.S. Senators, professors, researchers, physicians, and patient advocates. Major themes of the forum included the impacts of recent executive and agency actions on NIH-supported research and downstream effects on scientific progress and patient health.

The Senate Appropriations Committee recently announced a full committee hearing series that will begin at 10:30AM ET on April 30 entitled “Biomedical Research: Keeping America’s Edge in Innovation.” The first hearing in the two-part series will feature researchers and stakeholder groups to discuss the importance of U.S. biomedical research for the nation’s health and economy. The second hearing, which will occur at a later date, will include Administration witnesses testifying on the federal government’s role in investing in and fostering biomedical innovation. The hearings will be livestreamed here.

HHS Announces Restructuring and Reduction in Force

On March 27, the Department of Health and Human Services (HHS) announced a “dramatic restructuring in accordance with President’s Trump’s Executive Order, 'Implementing the President’s ‘Department of Government Efficiency’ Workforce Optimization Initiative.' " According to the press release, the restructuring includes a reduction in workforce of about 10,000 employees and that when combined with HHS’s other efforts, the “restructuring results in a total downsizing from 82,000 to 62,000 full-time employees.”

According to an accompanying fact sheet, the NIH “will decrease its workforce by approximately 1,200 employees by centralizing procurement, human resources, and communications across its 27 institutes and centers.”

Additionally, the HHS recently issued information on terminated awards, including at NIH, through the Department’s publicly available Tracking Accountability in Government Grants System (TAGGS). The spreadsheet of terminated awards includes information on the awarding office, award number, recipient name, date terminated, total award amount for the budget period, anticipated amount canceled as a result of the termination, and award title.

In response to these announcements, Sen. Patty Murray (D-Wash.), Vice Chair of the Senate Appropriations Committee, along with former NIH Director Monica Bertagnolli, M.D. and other former HHS leadership, discussed in a video the potential impacts of the restructuring and reduction in force.

Would you be willing to share to help others in the CSD?

During the CSD's Development Day on March 8, we discussed each of our individual "superpowers" and how we can share those strengths with others in the skin disease community.

Additionally, many of our members have mentioned how beneficial it would be to have a repository of helpful guides they could glean from to inform their own work and minimize the need to start from scratch, which would save tons of precious time and elevate our whole community.

If you would like to be paired with another CSD member to share your "superpower," and/or if you are in need of another members' "superpower," please let us know! Finally, if you have templates or examples of organizational policies, fundraising strategies, patient conference planning, email drip campaigns, and the like, please share them! You can easily upload those documents here. If you are unsure if the resource would be useful or not, just ask! We're here to help.

CSD Patient Conference Steering Committee

The CSD is beginning to prepare for the CSD Patient Conference in the Fall of 2026! Would you like to join the CSD Patient Steering Committee? If so, please email Natalie Mamerow, CSD Communications Manager. Your engagement on the committee will help shape the backbone and spirit of this inaugural conference!

The Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST) Research Grant Program Accepting Letters of Intent

The Foundation for Ichthyosis & Related Skin Types (FIRST) is now accepting letters of intent (LOI) for the 2025 Research Grant Program. Projects with a promising LOI will be asked to complete a full application (5 page narrative). Pilot awards are available for up to $15,000 for one year. Research grants will be awarded for up to $50,000 for year one, with potential for a second year of funding with evidence of adequate progress and available funds. Priority will be given to applications that can be substantially advanced with the funding provided. Different types of ichthyosis research will be considered.  

Letters of Intent (LOIs) are due by Friday, April 18, 2025. Please see here for more information!

FDA's Accelerating Rare disease Cures (ARC) Program Update

The FDA’s Rare Disease Endpoint Advancement (RDEA) Pilot Program accepts quarterly proposal submissions by the following deadlines: March 31; June 30; September 30; and December 31.

The RDEA Pilot Program supports novel efficacy endpoint development for drugs that treat rare diseases. Sponsors whose RDEA proposals are admitted into the pilot program will have the opportunity for additional interaction with interdisciplinary FDA experts on endpoint development as well as the associated review divisions.

Meeting requests may be submitted on a rolling basis and must be received by the last calendar day of each quarter (see submission deadlines above).

April is Sarcoidosis Awareness Month

Each April, we come together to shine a light on sarcoidosis, a rare and often misunderstood disease. Awareness Month is a time to educate, advocate, and support those affected—helping to drive research, improve treatments, and ensure no one faces sarcoidosis alone.

This year is especially meaningful as Foundation for Sarcoidosis Research (FSR) celebrates 25 years of progress. Our theme, "Facing Sarcoidosis Together," highlights the power of community in tackling this disease. Whether you're a patient, caregiver, or ally, your voice can make a difference. Join us in spreading awareness and taking action! Get involved today – learn more at https://www.stopsarcoidosis.org/ and take a look at this social media toolkit!

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The Coalition of Skin Diseases gratefully acknowledges the generous support of our

Healthcare Industry Partners.