Contact UPA at 800-868-1292 or info@porphyria.org
Join us Sept 13-15, 2024 in Chicago, IL for a weekend of connection, celebration and learning with the porphyria community!
UPA RECEIVES PRESTIGIOUS CHAN ZUCKERBURG INITIATIVE GRANT
The United Porphyrias Association (UPA) is honored to announce its selection as a recipient of the Chan Zuckerberg Initiative’s (CZI) Rare As One grant. This five-year grant will significantly enhance UPA’s ability to build a comprehensive research network and strengthen collaboration between patients, researchers, and clinicians to accelerate progress in the diagnosis and treatment of porphyria.
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PHASE 3 INSPIRE STUDY FOR MT-7117 NOW RECRUITING PARTICIPANTS
Eligible participants must have EPP or XLP diagnosis, have not previously received MT-7117, be age 12+ and meet additional eligibility requirements. Please complete an INTEREST FORM. Your response is completely confidential, only for designating your interest in further information. Contact UPA at 800-868-1292 or email us at info@porphyria.org with any questions.
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YOU ARE NOT ALONE!Connecting with others who understand what you're going through is a great way to build a support system and community. Join a Connect Up group to connect and socialize with others in a safe and inclusive environment (via Zoom). We have groups for AIP, HCP, VP, EPP, XLP, HCP and CEP. New groups are formed based on interests and experiences.
PORPHYRIA TOGETHER ON FACEBOOKWe welcome you to join Porphyria Together, a new closed Facebook group where you will find helpful information in a safe community setting. JOIN US
The United Porphyrias Association is committed to improving the quality of life of the porphyria patient community and is relentlessly focused on advancing disease awareness, research, and therapies in all the porphyrias.
A world where patients are free from the pain and challenges of porphyria.
"I was diagnosed at the age of 6 with EPP after my parents noticed that every time I was outside I was experiencing anguishing discomfort. I never fully comprehended my diagnosis until I was able to connect with others. With the help of the UPA, I want to be able to help others live more comfortably with EPP and support the vision of a world where patients are free from the pain and challenges of porphyria. "
