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 located at 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.
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