Advocates from the National Scleroderma Foundation traveled to Washington, D.C. this past weekend to participate in Hill Day 2026 hosted by the Coalition of Skin Diseases (CSD), joining advocates and organizations from across the skin disease community to meet directly with lawmakers on Capitol Hill.
The Coalition of Skin Diseases brings together organizations representing a wide range of dermatologic and autoimmune conditions to advocate collectively for policies that improve the lives of individuals living with skin diseases. By uniting their voices, coalition members are able to highlight shared challenges – including the need for increased medical research funding, improved access to specialized care, and stronger federal support for patients and families.
As part of the coalition, National Scleroderma Foundation advocates shared the unique experiences and challenges faced by those living with scleroderma, ensuring the scleroderma community was represented in important conversations with policymakers.
Throughout the weekend, advocates met with congressional offices to raise awareness about scleroderma and emphasize the importance of continued investment in research, patient resources, and access to quality care. Advocates also shared personal stories to help lawmakers better understand the real-life impact of living with a rare and complex autoimmune disease.
“Advocacy is one of the most powerful tools we have to create change for the scleroderma community,” said Dionna Bartos, Director of Education. “It was an honor to stand alongside our incredible National Scleroderma Foundation advocates and the many inspiring organizations and advocates involved with the Coalition of Skin Diseases, share my personal story on Capitol Hill, and help ensure that the voices of those living with scleroderma are heard by policymakers.”
The National Scleroderma Foundation extends heartfelt thanks to every advocate who participated in Hill Day and dedicated their time, passion, and personal experiences to advancing awareness and advocacy efforts for the scleroderma community. Their voices continue to strengthen the Foundation’s mission of support, education, and research for all those impacted by scleroderma.
