Meet the incredible people who live with porphyria
Meet Elsie, CEP Warrior
Elsie has been living with congenital erythropoietic porphyria (CEP), a rare condition that makes her extremely sensitive to sunlight.
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.