Contact UPA at 800-868-1292 or info@porphyria.org
Join us for SUN ESCAPE 2025, a weekend of all fun and no sun in May 2025!
UPA is ready to take the next step in advancing porphyria research, diagnosis and care with new CZI grant!
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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Dr. Bruce Wang will be taking your porphyria questions live!
Join us on the Porphyria Together Facebook Group on Saturday, October 19th at noon ET.
You can check out past What's UP Doc? Live Recordings in the featured section of Porphyria Together.
JOIN PORPHYRIA TOGETHER TO PARTICIPATE
APPLY NOW FOR SUN ESCAPE 2025
Shadow Jumpers and the United Porphyria Association have teamed up (again!) for SUN ESCAPE WEEKEND 2025 happening at Victory Junction in North Carolina May 1st to May 4th.
We are looking for 32 photosensitive families from across North America (and 40 volunteers) to join us in celebrating all things Fun and all things No Sun.
SUN ESCAPE is open to kids from North America ages 6-17 with a photosensitive condition and their families. The weekend is completely free to participating families, including travel costs.
TALK TO SOMEONE WHO UNDERSTANDS
Connect by phone or video call to receive support, guidance and build meaningful connections with a fellow porphyria patient or caregiver. Available in English and Spanish.
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.
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. "
