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.
What we advocate for
Several important laws and agencies are working together to improve life for people with porphyria. Each one focuses on different parts of the patient journey: more research, better training for doctors, faster access to treatments, and more support for families.
Through advocacy we can ensure all porphyria patients get diagnosed earlier, treated more accurately, and supported more fully. Below are the key issues we're working on and how you can make an impact.
