Meet the incredible people who live with porphyria

Meet Aida, CEP Warrior
Stories United Porphyrias Stories United Porphyrias

Meet Aida, CEP Warrior

Read Aida's powerful story of living with CEP in Iran. From wheelchair use to finding hope through art, her journey is one of resilience and strength. Discover how she turns pain into beauty.

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Meet Maria, CEP Warrior
Stories United Porphyrias Stories United Porphyrias

Meet Maria, CEP Warrior

Meet Maria, a 6-year-old battling Congenital Erythropoietic Porphyria (CEP). Discover her story of resilience and the challenges of this rare disease that forces her to avoid sunlight.

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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.