Helpful Links
United Porphyrias Association has curated a list of additional resources and trusted outside organizations dedicated to supporting individuals and families impacted by rare disease.
The below links provide valuable information, guidance, and connections to further assist you on your journey.
Not sure what to look for? The UPA Patient Navigator is always available to assist you with finding resources to support your needs.
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The UPA is always glad to support you and connect you to accurate and reliable information on the porphyrias. You may also have a porphyria organization located in your country.
For Porphyria support across the globe, please contact your member country leaders listed on the Global Porphyrias Advocacy Coalition (GPAC) website. If it is listed on the GPAC site – it is a reliable organization.
The International Porphyria Network (Ipnet, previously the European Porphyria Network) also provides a list of porphyria centers in other countries and offers some resources for countries without dedicated porphyria testing.
Porphyria News curates a selection of trusted and relevant top news stories for the Porphyria community and features columns from porphyria community members.
Get Connected
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Get your questions answered
Our Patient Navigator can help you find porphyria specialist, access testing and treatments, and get your porphyria questions answered.
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Find others who know what it's like
Connect regularly with small group of your peers! Groups are created around diagnosis and particular experiences/needs.
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Talk one-on-one
Connect with a UPA Ambassador who understands what you're going through, because they've been there too.