Trick or treat? We choose TREAT! This October, we're serving up a collection of exciting updates that are sure to delight our skin disease community. Just as every costume tells a different story, every person in our community has a unique journey – and the CSD is here to support all of them. From spooky season festivities to year-round advocacy, we've been busy gathering resources and opportunities that we can't wait to share. Ready to unwrap what we've been up to? | | |
Help Shape CSD’s 2025–26 Advocacy Priorities
We invite you to take part in a brief survey to help guide the CSD's advocacy priorities for 2025–26. Your input will directly inform the policy positions we champion on behalf of the 84 million individuals living with a skin condition.
Please take a few minutes to complete the survey by close of business on November 15. We ask that you respond thoughtfully and on behalf of the patient population your organization represents.
SURVEY HERE!
Thank you for your time, expertise, and continued partnership in advancing the needs of the skin disease community.
| | The CSD was a proud virtual exhibitor at the Autoimmune Community Summit last month. The Summit was packed with transformative content, expert insights, and practical tools designed for anyone affected by autoimmune disease. This two day virtual event provided educational and empowering sessions led by physicians, researchers, mental health professionals, policy leaders, patient advocates and more and focused on pressing topics that impact the autoimmune community, including communicating with one's healthcare team, symptom management, new research, understanding one's rights, diet and nutrition, and more. | |  | |
For the second year in a row, the CSD exhibited at FMX, the American Academy of Family Physicians' annual conference. Natalie Mamerow, Director of Community Engagement, represented our coalition and connected with over 5,000 dedicated healthcare professionals.
This valuable opportunity allowed us to:
- Raise awareness about skin diseases
- Highlight the support our member organizations provide to patients and families
- Connect with physicians and residents eager for patient resources
The response was overwhelming! Nearly every single one of our CSD QR stickers was picked up by healthcare providers. These innovative stickers affix to the back of medical badges and direct patients to our webpage, where they can explore member organizations and discover essential resources.
The enthusiasm from healthcare professionals was truly inspiring, and their strong interest in better supporting skin disease patients reinforced the importance of our mission. Together, we're making a meaningful difference in connecting patients with the care and support they need.
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Share Your Feedback: CSD Member Empowerment Webinar Series
Thank you to everyone who participated in our recent Member Empowerment Webinar Series! We hope you gained valuable insights and practical strategies to support your organization's work.
Your feedback is essential to helping us create programming that truly meets your needs. Please take a few minutes to complete our brief survey and share your experience. Tell us what worked well, what topics you'd like to explore in future sessions, and how we can better support you in maximizing your impact.
Your input will directly shape our future webinars and resources. Thank you for taking the time to help us serve you better!
P.S. If you missed our Member Empowerment Series on September 18, "Amplify Your Impact: Using People Strategy to Fuel Mission Success," you can view a recording of it here.
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CSD Signs Coalition Letter in Support of NIH Funding
Shortly before the start of the government shutdown, the CSD - along with 75 other organizations - sent a letter to Congressional leadership urging them to pass a final Fiscal Year 2026 appropriations bill that includes $48.7 billion in funding for the National Institutes of Health (NIH). The letter also asks that input from the authorizing committees and stakeholders is considered before any changes are made to the NIH’s current structure, among other policy concerns and requests.
We encourage you to share the CSD's action alert platform with your members. This advocacy tool makes it easy for your members to:
It's more important than ever to encourage your members to make their voices heard! Together, we can ensure continued progress for skin disease research and treatment.
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Last month, Rep. McBath (D-GA) and Rep. Allen (R-GA) re-introduced the Safe Step Act, a bipartisan bill to ensure patients can safely and efficiently access the best treatment available by improving step therapy protocols. The CSD has been a longtime supporter of the Safe Step Act as it would improve timely access to care for skin disease patients. Please share the CSD's Action Alert platform with your members so that they can contact their Members of Congress to ask for cosponsorship of this bill!
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AAD Annual Meeting and CSD Development Day
The CSD is excited to host our annual Development Day in conjunction with the American Academy of Dermatology's Annual Meeting in Denver, CO.
Our full Membership is invited to this event taking place on Saturday, March 28th, from 8:30 am - 12:45 pm. The CSD and the AAD are thrilled to be able to offer two complimentary registrations for each of our Patient Group member organizations.
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. Please reach out to Natalie Mamerow, Director of Community Engagement, with any questions.
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Fall is a busy conference season for many of the CSD's members. Please take a look at some of the conferences and events being held in the coming weeks:
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Have Your Say: Help Shape the Global Action Plan on Skin Diseases
The World Health Organization (WHO) has launched a survey for Member States and stakeholders - including patient organizations and people with lived experience - to inform the development of a Global Action Plan (GAP) that will guide implementation of the WHA Resolution on Skin Diseases, adopted in May 2025.
Your input will help define priorities, challenges, and solutions for improving skin health worldwide.
- Deadline: October 31, 2025
- Languages: Arabic, Chinese, English, French, Russian, and Spanish
- Access the survey here
- View the WHA Resolution on Skin Diseases here
Please share this opportunity widely within your networks and on social media - every voice counts in shaping the future of global skin health.
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What Patients Really Mean by “Unaffordable” - Time to Share YOUR “Why”
Is your prescription drug affordable or unaffordable? Share your "why!" The CSD is part of the EACH/PIC Coalition - and together with over 80 groups we are working to make sure efforts to improve affordability happening NOW includes patient-reported challenges.
Do you have issues with insurance? Are your costs too high? Do you and your doctor have to jump through hoops to get the medication you need? Those making decisions on how to improve access to prescription medications need to know YOUR WHY so solutions address YOUR needs.
Why are we asking for your participation? Current efforts in the USA are underway to address prescription drug affordability and access to vital therapies. Improvements are in process! It only takes 10 minutes for your voice to count!
Patients: Share Your Experience TODAY through October 31st, 2025
Learn more about this effort HERE!
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Medicare Enrollment Resources
The Annual Open Enrollment for Medicare began on October 15 and ends on December 7, 2025 for coverage beginning January 1, 2026. The CSD, in partnership with the Medicare Access for Patients Rx (MAPRx) Coalition, created a Medicare Part D prescription drug open enrollment guide and patient guide for our members, as well as an infographic.
Additional resources include:
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Patient Advocacy Leaders and Drug Development Industry Network
PALADIN is a first-of-its-kind consortium dedicated to transforming the pace of medicines development through optimizing patient advocacy group–industry collaboration.
They are a pre-competitive, disease-agnostic membership community working together to create consensus-based resources, guidelines and solutions that will transform how patient advocacy groups, pharmaceutical and biotechnology companies collaborate in the future.
You can find out more about PALADIN and the resources they offere here.
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The Medical Device Innovation Consortium (MDIC) is looking for any patient or caregiver advocates who would be interested in contributing to a session about Patient-Centric Design at the upcoming MDIC Medical Extended Reality (MedXR) Summit, taking place Nov. 4 – 6. This session will feature perspectives from human factors experts, clinicians, and patients. They are looking to include a success story from a patient or caregiver who has experience using extended reality (XR) technologies in a health care setting or caring for someone who has. This can either be a virtual attendance, submitting a short video, or sharing written story with compensation provided per format. Please contact medxr@mdic.org or jgolder@mdic.org if interested.
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Eczema Awareness Month
Every October, the National Eczema Association raises awareness and amplifies the voices of those living with eczema. This year’s #UnhideEczema campaign highlights both the visible and hidden challenges of the condition, aiming to break stigma and spark understanding.
Visit EczemaMonth.org to explore what’s ahead and how you can get involved. Download shareable social media graphics and a printable flyer to spread the word online and in your community.
Let’s raise awareness together!
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- Three researchers win the Nobel Prize in medicine for autoimmune discovery
- One news anchor's vitiligo diagnosis and how he got comfortable in his own skin
- Teen with ichthyosis goes viral for efforts to "shed the stigma"
- “She sees the world her own way": a nurse’s plea to end stigma around daughter’s albinism
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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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