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GIVE TO THE UNITED PORPHYRIAS ASSOCIATION
Together, we’re changing what it means to live with porphyria.
Porphyrias are rare, often misdiagnosed, and too often faced alone. Your gift helps people find answers, connect with experts and each other, and move research forward, here in the U.S. and around the world.
Patient support from people who understand, including our Patient Navigator
Patient-driven research in partnership with the American Porphyria Expert Collaborative (APEX)
Free education and tools for patients, families, and clinicians
The United Porphyrias Association is a 501c(3) nonprofit, founded in 2022 by and for the porphyria community. Gifts are tax-deductible to the extent allowed by law.
WHERE YOUR GIFT GOES
Five ways your support moves the porphyria community forward.
Research
APEX, our research arm, advances a patient-driven research agenda alongside porphyria experts.
Education
Clear information on every porphyria, Drug Safety for AHP, and resources for health professionals.
Awareness
Campaigns and events that shorten the road to diagnosis and bring the community together.
Advocacy
A strong patient voice with lawmakers, regulators, and industry partners on access to care.
Support
Connect UP meetings, UPA One to One, our Patient Navigator, and Find Specialist.