Public Policy
The VF is a nonpartisan organization dedicated to raising awareness and educating the vasculitis community about impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses and treatments. We engage with other coalitions to lift our voices and amplify the healthcare needs of our community.
The development of a public policy area started in 2023 when we asked our community, “What keeps you up at night?” We sent out over 3,000 surveys and 1,028 people responded. Overwhelming, the responses involved access to care.
In 2024, the VF worked with Manatt Health Strategies, LLC to create a landscape analysis of the current state of public policy impacting the journey of someone living with vasculitis.
The goal for 2025 is to develop the following educational tools:
- Policy webinars
- Current healthcare issues impacting people living with vasculitis
- Opportunities to work with coalitions to share your stories
Find Upcoming Events
February 24 – 28 Rare Disease Week
February 26 Rare Disease Day
EveryLife Foundation Activities
NORD Activities
Key Areas to Watch in 2025
Legislative: The Orphan Drug Act
- What is it?
- What does it mean to the vasculitis community?
- What is on the horizon in 2025?
Regulatory: FDA Rare Disease Innovation Hub
- What is it?
- What does it mean to the vasculitis community?
- What is on the horizon for 2025?
Scientific: Office of Autoimmune Disease Research
- What is it?
- What does it mean to the vasculitis community?
- What is on the horizon in 2025?
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:
