

Get to Know the Coalition of Skin Diseases, a New NHC Member
By: Kelly Barta, Executive Director, Coalition of Skin Diseases
What is your organization’s mission?
The Coalition of Skin Diseases (CSD) advocates on behalf of the 84 million Americans living with a skin disease. As the largest consortium of skin disease patient advocacy organizations in the United States, the efforts of the CSD aims to ensure that all Americans living with dermatological diseases and skin traumas receive the care they need to live healthy and productive lives. Our mission aligns with that of the National Health Council (NHC), whose mission is to provide a unified voice for people with chronic diseases and disabilities, and their families, to advance patient-centered health policy and practices.
By working independently, in coalition, and alongside advocacy organizations committed to patients living with dermatological conditions, the CSD endeavors to be at the forefront of progress toward a day where all individuals affected by skin disease have access to life-preserving or changing treatments and high-quality care. We aim to accomplish this by:
- Fostering education and awareness of skin diseases and disorders;
- Advocating for access to appropriate and quality health care and treatments;
- Contributing to burden and related skin disease research; and
- Strengthening dermatologic patient advocacy organizations through the sharing of resources.
Tell us about the communities you serve.
Founded in 2007 by several national dermatological patient organizations, the CSD has since grown into a thriving community of 36 patient advocacy groups. The coalition is passionate about raising the profile of skin diseases and supporting those living with a skin disease by providing the patient perspective in medical, research, policy, and regulatory arenas. The CSD is run by a Board of Directors composed of representatives from member organizations and is sustained by funds provided through membership dues, grants and sponsorships, and individual contributions.
Is there an accomplishment your organization is most proud of?
On May 18 – 20, the CSD orchestrated a remarkable event with a Capitol Hill Day fly-in and Congressional Briefing about “Skin Disease: How Science, PBMs, and Access to Care are Impacting 84 Million Americans.” For the first time ever, we held a complimentary skin check event on the Hill for Members of Congress and their staff— courtesy of the Dermatology Nurses’ Association.
This significant gathering saw 81 passionate patient advocates, hailing from 24 states, come together to amplify their voices and advocate for crucial policy changes. CSD advocates conducted 106 legislative meetings. The collective plea to policymakers was clear—a call for enhanced access to quality care and treatment options for individuals battling skin diseases, alongside a strong request for robust funding to advance research and educational initiatives in the field.
Our advocates were met with listening ears, and in many cases a positive response, from legislators and their staff to support bills on our policy agenda and robust funding to the National Institutes of Health (NIH), specifically skin disease research at the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), as well as the Chronic Diseases Education and Awareness Program at the Centers for Disease Control and Prevention (CDC).
The CSD’s Congressional Briefing attracted strong engagement of over 140 individuals from a wide range of participants, including staff from congressional offices, federal agencies, academic institutions, and private sector organizations. During the briefing, Congressman John Joyce (R – PA) — Congress’s sole dermatologist — delivered remarks that both motivated our advocates and validated the importance of our proposed legislative reforms. Attendees responded very positively, with many noting that the presentations were genuinely enlightening and compelling.
With the addition of a virtual element to our Hill Day this year, those advocates who were unable to join us in person still had the opportunity to make their voices heard. The CSD’s newly developed online action tool generated 144 emails delivered to 81 legislators informing them of the issues skin patients truly care about. We envision a world in which all patient advocates — and their family, friends, and colleagues — feel equipped and empowered to advocate on behalf of the skin disease community regardless of their physical abilities, location, advocacy experience, or time constraints.
What inspires you to lead and create change through your work?
As someone who has suffered from skin disease myself, both eczema and Topical Steroid Withdrawal Syndrome, I deeply understand the depth and breadth of unmet needs in this community. With many skin diseases being driven by factors in our environment and over 60% of CSD member groups representing those with an immune mediated disease, this is an area our group could tackle that could effect change, ultimately improving health for all. I often think of the skin community, nearly a third of the US population, as a sleeping giant. If we can awaken, empower and mobilize these individuals, together we can build a better tomorrow and a world that is safer and more health-friendly for generations to come.
Coalition of Skin Diseases is a new member of the National Health Council. For more information on NHC membership, please email membership@nhcouncil.org.