Meet the incredible people who live with porphyria

Meet Claudia, VP Warrior
Stories United Porphyrias Stories United Porphyrias

Meet Claudia, VP Warrior

Claudia battled years of unexplained pain, paralysis, and misdiagnoses before discovering she had Variegate Porphyria and Hypokalemic Periodic Paralysis. Read her inspiring journey of advocacy, treatment, and hope.

Read More
Meet Sean, VP Warrior
Stories United Porphyrias Stories United Porphyrias

Meet Sean, VP Warrior

After being diagnosed with Variegate Porphyria in 2009, Sean had to forgo the typical path of attending college or working a traditional 9-to-5 job. Despite this, he didn’t let his condition define him.

Read More

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.