Meet the incredible people who live with porphyria

Meet Craig, EPP Warrior
Stories United Porphyrias Stories United Porphyrias

Meet Craig, EPP Warrior

Discover Craig Leppert’s inspiring story of living with Erythropoietic Protoporphyria (EPP). From misdiagnoses to founding Shadow Jumpers, learn how he transformed challenges into advocacy.

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Meet Victor, EPP Warrior
Stories United Porphyrias Stories United Porphyrias

Meet Victor, EPP Warrior

Discover Victor A. Mejías' inspiring story of resilience with EPP. Learn how he overcomes pain, isolation, and sunlight sensitivity every day—while mentoring others with hope and strength.

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Meet Jennifer, EPP Warrior
Stories United Porphyrias Stories United Porphyrias

Meet Jennifer, EPP Warrior

Jennifer’s life took a dramatic turn in 2017 when her EPP worsened, making any kind of light intolerable and forcing her to live in near-total darkness.

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Share your story!

Your story has the power to:

  • Create a sense of belonging and mutual support within the porphyria community

  • Raise awareness and understanding of porphyria among healthcare providers and the public

  • Reduce feelings of isolation and challenge the stigma often associated with a porphyria diagnosis

  • Offer hope, guidance and inspiration who may be facing similar challenges

We’re here to support you in telling your story, in your own voice. Stories will be featured on UPA’s social media channels, website, and in our newsletter.