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The CSD wishes you a happy 2025! We embark on this new year with a sense of gratitude for all the skin disease community accomplished in 2024 and with a renewed spirit of determination for all we hope to achieve in 2025.
This year we hope you'll embrace your "sparkle" - the things that make you shine - while shedding whatever isn't serving you in this moment of your life. New Years' goals can feel overwhelming, but please remember you are not alone on your journey!
Take a peek at what you'll find in this month's newsletter:
- CSD Development Day at the AAD Meeting in Orlando
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Review our 2023/2024 Annual Report
- CSD Board Member Results
- Action Needed: Update Your CSD Member Flyer
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Mark your calendars for the CSD 2025 Hill Day registration opening on February 14!
- Legislative and Policy Updates
- Patient Group Learning and Engagement Opportunities
- Skin in the News
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CSD at the AAD Annual Meeting
The CSD is excited to host our annual Development Day in conjunction with the American Academy of Dermatology's Annual Meeting in Orlando, Florida. Our full Membership is invited to this event taking place on Saturday, March 8th, from 8:30 am - 12:45 pm, in Ballroom N at the Hyatt Regency Orlando. This event will be a time for our hard working Members to be poured into with lots of great content from our keynote speakers and opportunities to connect with colleagues, old and new. The Development Day will include catered breakfast and lunch. At 1:00 pm, we will be hosting our Annual Meeting for voting Members (Patient Groups) in the same room.
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CSD Releases 2023/2024 Annual Report
The CSD has released its 2023/2024 Annual Report. Throughout the past year, the CSD has remained steadfast in our commitment to ensuring that the voices of individuals affected by skin conditions are heard at all levels of government and within the healthcare system. Through strategic advocacy and educational efforts, we have achieved remarkable milestones.
We are so grateful for the Board's leadership, our members' commitment, and the support of our corporate sponsors. We look forward to another year of progress and continued collaboration.
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CSD Board of Direction Results
The CSD's Governance and Nominations Committee is pleased to announce the results of the vote for the Board of Directors for the 2025 - 2027 term.
President – Brindley Brooks, HS Connect
Treasurer – Brent Hazelett, HS Foundation
Member at Large – Chris Boynton, FIRST
Member at Large– Janice Schwartz, PC Project
Member at Large – Holly Priebe, CLF
The following Board members were not up for a vote this term, and the CSD is thrilled to have them continuing to serve in these leadership roles:
Secretary – Michele Guadalupe, NEA
Member at Large – Linda Markham, DNA
Member at Large – Kristen Wheeden, United Porphyrias
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Action Needed:
Update Your CSD Member Flyer
Please update your CSD member flyer by Wednesday, January 22! Member flyers are a one page (double sided) document that provide a summary of the member's organization.
The CSD utilizes these flyers as an important resource on its website for healthcare providers, as well as a critical educational and awareness tool at conferences and meetings (see picture on the right).
To make updates or changes to your flyer, associate members/patient groups can use this link, and affiliate members can use this link.
Once any edits are submitted, you will have one opportunity to review and make any additional changes to your flyer before it's finalized. Please reach out here with any questions or concerns.
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CSD 2025 Hill Day - Registration Opens February 14!
Mark your calendar for the upcoming CSD Hill Day from May 18 - 20, 2025! 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 for participants. The CSD will also host a Congressional Briefing on May 20 highlighting the needs of the derm patient community at large. Registration opens on Friday, February 14!
In an effort to share the excitement, spread the word to your organization's members, and steer advocates to registration, 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. Please don't hesitate to reach out with any questions.
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Goodbye, 118th Congress!
Hello, 119th Congress!
Shortly before the holidays, Congress passed a continuing resolution (CR) that funds the government through March 14, 2025. While the final bill did not include pharmacy benefit manager (PBM) reform - one of the CSD's legislative priorities - it did avert a government shutdown, which would have affected public health agencies such as the National Institutes of Health (NIH) and the Centers for Disease and Control Prevention (CDC).
Members of Congress were sworn in on January 3, 2025, marking the beginning of the 119th Congress. On January 20, President-elect Trump will be sworn in as the 47th President of the United States of America. The CSD is eager to engage with the incoming Trump Administration and new and incumbent Members of Congress to champion legislation and policy on behalf of the skin disease community.
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Would you be willing to share resources to help others in the CSD? 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 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.
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FDA Reorganization - Public Engagement Staff
On October 1, 2024, the FDA launched a reorganization effort. The Stakeholder Engagement Staff (within the Office of External Affairs) and the Patient Affairs Staff (formerly within the Office of Clinical Policy and Programs) merged into one larger new team – the Public Engagement Staff within the Office of External Affairs. Through the new Public Engagement Staff, patient advocacy groups and other interested parties can engage with the Office of the Commissioner and other FDA centers and offices on agency priorities. For patient specific inquiries, please contact Patients Ask FDA. For other inquiries, please e-mail PublicEngagement@fda.hhs.gov.
To ensure they have the most current contact information for your organization, the FDA has asked that updated contact information be sent to them at PublicEngagement@fda.hhs.gov.
Please include in the email your name, position/title, topic(s) of interest, and email address.
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NIAMS Releases Strategic Plan for FY25 - FY29
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) recently released its FY25 - FY29 Strategic Plan, as well as a two-page fact sheet summary.
The plan's four goals include identifying and testing interventions; developing resources; supporting infrastructure, team science, and an inclusive workforce; and communicating advances. Dr. Criswell, the Director of NIAMS, states "We recognize that new opportunities may arise as progress is made. Therefore, while the stated priorities can serve as guideposts, we will continue to search for the best, most innovative ideas as we develop our roadmap for the remainder of the decade and beyond."
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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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