Public Policy
Health Policy & Advocacy:
The Vasculitis Foundation (VF) is a nonpartisan nonprofit organization dedicated to improving the lives of people living with vasculitis through education, support, research, awareness, and advocacy. VF works to advance science-driven health policies and legislation that expand access to timely diagnoses, specialized care, innovative treatments, and lifesaving therapies for patients and families affected by vasculitis.
VF’s Commitment to Advocacy:
Advocacy is a core part of the Vasculitis Foundation’s mission to support and empower the vasculitis community. VF works collaboratively with coalition partners, healthcare stakeholders, researchers, clinicians, policymakers, and the broader rare disease community to elevate the patient voice and advance policies that improve outcomes for people living with vasculitis.
VF is committed to:
- Promoting patient-centered healthcare policies
- Supporting robust investment in vasculitis and rare disease research
- Expanding access to innovative and emerging treatments
- Reducing barriers to affordable, high-quality care
- Educating policymakers about the unique challenges faced by vasculitis patients
- Empowering patients and caregivers to become effective advocates
VF works to ensure that the needs of vasculitis patients remain part of important healthcare conversations at every level. To do that, VF equips patients and families with the tools, knowledge, and confidence to share their stories effectively with legislators, healthcare organizations, and other decision-makers.
Together, the vasculitis community can help create a healthcare system that is more responsive, equitable, innovative, and compassionate — ultimately advancing better treatments, improved quality of life, and future cures for vasculitis.
Find Events
Key Areas to Watch in 2026
Legislative: Ensuring Pathways to Innovative Cures (EPIC) Act
The EPIC Act (S.832) is a bipartisan bill designed to ensure that Medicare beneficiaries with complex and rare conditions, such as vasculitis, have access to the full range of specialty medications prescribed by their healthcare providers. The Act would require Medicare Part D plans to cover all drugs in six protected classes—including immunosuppressants and anti-cancer agents—without unnecessary restrictions or delays. By strengthening these protections, the EPIC Act aims to safeguard timely access to essential treatments for patients with serious and rare diseases. Learn More
Legislative: The MINI Act
- The MINI Act is a proposed legislative change that would amend the Inflation Reduction Act (IRA) to better support the development of genetically targeted technologies (GTTs)—innovative therapies that show promise for treating rare and complex diseases such as vasculitis. Learn More
Legislative: Safe Step Act
- The 2025 Safe Step Act (H.R. 5509) is a bipartisan bill that seeks to reform step therapy protocols in employer-sponsored health insurance plans. Step therapy requires patients to try and fail on lower-cost medications before accessing the treatment their doctor originally prescribed, which can sometimes delay effective care. The Safe Step Act would create a clear process for patients and providers to request exceptions to these requirements, aiming to ensure that individuals can access the most appropriate therapies in a timely manner while still allowing insurers to manage costs. Learn More
Regulatory: FDA Rare Disease Innovation Hub
- The FDA Rare Disease Innovation Hub is a specialized initiative within the U.S. Food and Drug Administration aimed at accelerating the development and approval of treatments for rare diseases. By providing regulatory guidance, fostering collaboration among stakeholders, and supporting innovative approaches to research, the hub helps address the unique challenges faced in rare disease drug development. It also emphasizes patient engagement and the use of advanced technologies to bring new therapies to patients more efficiently.
Scientific: Office of Autoimmune Disease Research
- The Scientific Office of Autoimmune Disease Research is a dedicated office within the National Institutes of Health (NIH) focused on advancing research into autoimmune diseases. Its mission is to coordinate, support, and accelerate scientific efforts across federal agencies and research institutions to better understand, prevent, and treat autoimmune conditions. This office plays a crucial role in fostering collaboration, funding innovative studies, and promoting the translation of scientific discoveries into new therapies.
Coalitions and Partnerships that work with the VF:
The Vasculitis Foundation gratefully acknowledges the support we received to learn about rare disease public policy and engage with our coalitions and partners:
