Advocacy Takes Many Forms
You don’t have to be a policy expert or travel to Washington, D.C. to be an advocate. Advocacy is about using your voice, your story, and your strengths to create change wherever you are.
Policy & Legislative Advocacy - Meet with lawmakers. Influence policy. Drive systemic change.
Digital & Social Advocacy - Share your story. Raise awareness. Build visibility online.
Storytelling & Writing - Blogs, media, op-eds. Share your unique lived experience.
Healthcare Education - Help providers better understand the patient experience.
Fundraising & Awareness - Fuel research, programs, and visibility.
Community & Peer Support - Connection groups, outreach, all to reduce isolation.
Leadership & Speaking - Get on some stages and represent the community.
As a member of our Advocacy Team, you can:
Join strategy and connection calls
Participate in advocacy campaigns (local or national)
Share your story with the media or online
Attend advocacy days (virtual or in-person)
Educate your community or healthcare providers
Step into leadership opportunities
This Isn’t Just Advocacy. It’s Community.
You will be surrounded by people who understand your journey and are ready to stand beside you.
Current Advocacy Opportunities
Advocate Training Cohort 3
June Awareness Month
Blog and Story Collection
Initiatives
Event Volunteer (In-Person - Various Locations)
August In-District Lobby Days
Email info@stopscleroderma.org to learn more!
Where We’re Focusing Our Advocacy Right Now
Change happens when we focus our voices. Here are the issues our community is actively advancing, and where you can make an impact today.
Support Scleroderma Research Through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP)
The PRMRP within the Department of Defense is an important source of funding for scleroderma research. Over multiple decades, the PRMRP has directed more than $28 million to scleroderma research through designated topic funding and a dedicated Scleroderma Research Program, supporting more than two dozen peer-reviewed research awards focused on disease biology, diagnosis, and treatment. Scleroderma advocates fight for scleroderma to remain as an eligible topic in the PRMRP each year.
How you can help:
✔ Contact your state Senators
✔ Share your story
✔ Share why research matters to you
✔ Join our advocacy team
