Spotlight Porphyria
Welcome to Spotlight Porphyria where we feature all things porphyria! Including:
Porphyria Voices shares experiences, insights, and advice from the porphyria community.
What's UP Doc? Where porphyria experts take your questions.
Summing UP explains the latest research in easy-to-understand summaries
Meet your experts and advocates where we meet the people changing the world for porphyria.
…and more!
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Promise of ‘All Fun and No Sun’ Gives Photosensitive Children the Chance to Enjoy Camp Experiences
Victory Junction, a year-round camp dedicated to enriching the lives of children with complex medical and physical conditions, will host the second annual Sun Escape Weekend in collaboration with Shadow Jumpers and The United Porphyrias Association May 1-4, 2025.
Statement from the American Porphyria Expert Collaborative
The American Porphyria Expert Collaborative (APEX) has issued a statement advocating for consistent and accessible porphyria testing to be available nationwide.
UPA Receives Prestigious CZI 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.