Meet the incredible people who live with porphyria

Meet Jennifer, Porphyria Warrior
Stories United Porphyrias Stories United Porphyrias

Meet Jennifer, Porphyria Warrior

Jennifer shares her journey living with porphyria and photosensitivity, and how photography became a source of healing, resilience, and connection. Her story explores adaptation, advocacy, creativity, and the power of support while living with a rare disease.

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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.

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