This week, advocates from across the country came together for the 2025 Virtual Hill Days, a pivitol event where members of the scleroderma community meet with lawmakers to share their stories, raise awareness, and advocate for policies that support patients and families affected by scleroderma.
Hill Days provide a unique opportunity for our voices to be heard on Capitol Hill, highlighting the urgent needs of the community and the critical importance of research, education, and access to care.
Participants engaged in meaningful conversations with legislators, sharing personal experiences and explaining how federal policies directly impact the lives of people living with scleroderma.
Shiloh is one of the advocates from the Texoma Chapter who participated in this week’s meetings. When her daughter was diagnosed with a rare disease, she knew she would need to start to make her voice heard. “There wasn’t a book the doctor could give me that helped our family prepare for this new future,” Shiloh said. “When I asked our pediatric rheumatologist what I could do to learn more and ensure other families had more resources during this journey, she said, ‘Get involved.'”
These discussions are a vital part of ensuring that the needs of the scleroderma community are represented and prioritized at the national level. The dedication and passion demonstrated by every participant truly reflect the strength and resilience of our community.
Ashley Pruett, Vice President of Community Engagement, emphasized the importance of these ongoing advocacy efforts, saying: “Overall, the feedback we heard from the legislative offices was supportive. Legislators by and large support for our key legislative priorities – continuing critical medical research and improving access to affordable healthcare. The next step is to make sure they follow through on that support.”
We are profoundly grateful to everyone who participated in this year’s Virtual Hill Days. Your time, commitment, and courage in sharing your experiences are helping to create meaningful change. Together, we continue to raise awareness, influence policy, and strengthen support for all those impacted by scleroderma.
Shiloh added, “We cannot sit on the sidelines and grumble about the state of health care without taking action. If not us, then who? Also, you are not alone. Community shows up to support community, and the National Scleroderma Foundation is a community.”
Thank you for advocating, inspiring, and making your voices heard. We are stronger together.
Want to help shape policies that impact people living with scleroderma? Learn more about our advocacy efforts at Our Priorities – National Scleroderma Foundation.