Advocate
Where porphyria advocacy meets action
If you or someone you love has porphyria, you know how hard it can be to get the right diagnosis, treatment, or even basic understanding from the medical system. That’s why laws and federal programs that support rare diseases matter.
Since 1983, the Orphan Drug Act has helped drive progress for people living with rare diseases like porphyria. But families still face long diagnostic delays, limited treatment options, and barriers to care. That’s why UPA continues to advocate for stronger protections, expanded access, and more support for patients and caregivers- and you can help!
You don’t need to be a policy expert to make a difference!
You just need to know where to start. We’re here to guide you.
UPA’s Advocacy Partners
Porphyria patients and their families are part of a larger rare disease community working to improve diagnosis, access to treatment, research, and support for patients and caregivers.
A number of organizations are leading this work by advancing policies, providing advocacy tools, and giving patients and families a stronger voice with policymakers. By working alongside these partners, the porphyria community can help advance solutions that benefit people living with rare diseases across the country.
Below are some of the organizations helping lead rare disease advocacy and ways you can learn more, get involved, and make your voice heard.
The Everylife Foundation
Rare Disease Legislative Advocates’ Action Alert Center
Rare and Ready Coalition
Action Center
The Haystack Project
Action Center
National Organization for Rare Diseases
Policy and Advocacy Center