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Earlier this month the CSD hosted its Development Day at the AAD's Annual Meeting in Orlando, Florida. With the largest attendance we've seen yet (100 participants), there was a real sense of collaboration and inspiration in the air! Nevus Outreach Executive Director Lauren Isbell set the tone for the morning with a personal, welcoming introduction to our table discussions, after which we heard an overview of the CSD's upcoming work. We felt very grateful to have two amazing speakers - Dr. Chandler Self and Angela Burgess - who shared their respective "superpowers" with us and shared about how to side-step NGO burnout and more effectively engage our donor bases. Angela generously created a branding and fundraising toolkit for us to utilize free of charge. If you are interested in the meeting slide deck or the toolkit, please reach out.
Each and every one of you pours so much of yourself into the skin disease community, and we sincerely hope this day was a chance for you to feel appreciated and re-energized. We're reminded of the African proverb that says "If you want to go fast, go alone. If you want to go far, go together." We - the 84 million Americans with a skin disease - are indeed stronger when we come together as one voice. Let's keep sharing our "superpowers" with each other and with the world to create an unstoppable force for positive change.
| The CSD would like to thank Sagis for sponsoring the Development Day speakers! | |
Here's a preview at what you'll find in this month's newsletter:
- Registration is open for the CSD 2025 Hill Day from May 18 - 20!
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Submit a personal story for the CSD 2025 Hill Day
- Legislative and Policy Updates
- Sharing Your "Superpowers" With the Skin Disease Community
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March is Autoimmune Awareness Month
- Skin in the News
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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 derm patient community.
There is still time to ensure that the skin disease community you represent has a voice on Capitol Hill this year! Make sure that you and your patient advocates apply before the deadline of March 26 to secure your places.
We're excited to head to Washington, D.C. to advocate on behalf of the 84 million Americans with a skin disease. In addition to meeting with legislators to discuss the CSD's legislative and policy priorities, we'll have prominent speakers and advocacy training.
The CSD is providing travel scholarships for up to 75 individuals, starting with 2 advocates per CSD org, and then will open up to additional applicants. Feel free to have as many interested apply. Your organization will have the opportunity to choose which individuals from your community will be awarded scholarships.
In an effort to share the excitement and spread the word to your members, the CSD has created an easy to use "Save the Date Toolkit." The toolkit includes information about the event, the link to register, and draft language you can utilize for your organization's newsletter and social media, including an image for use on social media platforms.
Click here to register, and please don't hesitate to reach out with any questions.
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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.
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Complimentary Tabletop Exhibit for CSD Members at the Society for Investigative Dermatology 2025 Annual Meeting
The Society for Investigative Dermatology (SID) is excited to welcome CSD Members to San Diego, CA, for the 2025 Annual Meeting, taking place at the Hilton San Diego Bayfront Hotel from May 7-10, 2025!
The SID is pleased to extend a cordial invitation to members of the Coalition of Skin Diseases (CSD) to register for a Complimentary Tabletop Exhibit at the 2025 SID Annual Meeting.
The Tabletop Exhibit Registration Form must be submitted to the SID office by Monday, April 7, 2025.
For more information about your complimentary registration, please see here.
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CSD Holds Introductory Meetings with Freshmen Members of Congress
The CSD has begun virtual meetings with freshman Members of Congress to introduce the Coalition, share its legislative priorities, and educate congressional staffers about the burden of skin diseases. These meetings help build relationships and trust with Members of Congress and their staff and ultimately ensure that the skin disease community has a voice at the legislative and policy-making table.
During one of these meetings, Sen. Ruben Gallego's (D-AZ) office informed us that he is seeking personal stories from patients who would be impacted by cuts to Medicaid. The House recently passed a budget resolution that includes Medicaid cuts of up to $880 billion over a decade. If you live in Arizona and are interested in sharing your personal story with the Senator's office, please contact Natalie Mamerow, CSD Communications Manager.
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CSD Supports Introduction of the HELP Copays Act
The CSD signed onto an All Copays Count Coalition letter supporting the re-introduction of the bipartisan Help Ensure Lower Patient (HELP) Copays Act. This bill would end harmful copay diversion practices by offing a two-part solution that would eliminate barriers to treatment for some of the most vulnerable Americans — those who live with serious, complex chronic illness — and ensure that they can afford the medically necessary, often life-saving medications prescribed by their doctors. The HELP Copays Act is one of the CSD's top legislative priorities in the 119th Congress.
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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.
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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!
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FDA's Accelerating Rare disease Cures (ARC) Program Releases Annual Report
The FDA's Accelerating Rare disease Cures (ARC) Program recently released its Annual Report. The Center for Drug Evaluation and Research's (CDER) ARC Program brings together CDER’s collective expertise and activities to provide strategic overview and coordination of CDER’s rare disease activities. Its mission is to drive scientific and regulatory innovation and engagement to accelerate the availability of treatments for patients with rare diseases.
Over the past year, just a few of the ARC Program's many accomplishments include:
- Hosting 15 patient listening sessions on rare diseases;
- 29 rare disease new drug approvals; and
- 13 externally-led patient-focused drug development meetings on rare diseases supported by CDER staff.
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March is Autoimmune Awareness Month
This month the Autoimmune Association is rallying advocates nationwide to help declare Autoimmune Awareness Month in as many municipalities as possible.
A proclamation is more than just words on paper—it’s a public declaration of support that raises awareness and starts important conversations in your community. These proclamations put autoimmune diseases on the map (literally!) and show individuals living with autoimmune conditions that their stories matter.
When local, county, and state governments officially recognize March as Autoimmune Awareness Month, it signals a commitment to advancing education, research, and understanding. Together, these proclamations can create a coast-to-coast wave of awareness, recognition, and hope. Please click here to learn more!
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1717 N Street NW, Washington DC, 20036
info@coalitionofskindiseases.org
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The Coalition of Skin Diseases gratefully acknowledges the generous support of our
Healthcare Industry Partners.
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