Meet the incredible people who live with porphyria
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.
Meet Tamara, AIP Warrior
Tamara Paz, an Argentine athlete, defied odds after acute intermittent porphyria (AIP) nearly took her life. Read her story of misdiagnosis, survival, and reclaiming strength.
Meet Melissa, AIP Warrior
Meet Melissa, a Colombian warrior with acute intermittent porphyria and endometriosis. Her story of pain, resilience, and founding Alas Púrpuras will inspire you. Learn how she turns struggle into strength.
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.
Meet Julie, HCP Warrior
Julie has Hereditary Coproporphyria (HCP), a rare genetic disorder that makes her the only diagnosed child under 12.
Meet Elsie, CEP Warrior
Elsie has been living with congenital erythropoietic porphyria (CEP), a rare condition that makes her extremely sensitive to sunlight.
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.