Kasey was diagnosed with Congenital Erythropoietic Porphyria (CEP) at just three weeks old. After years of surgeries and liver failure, she received a life-saving transplant. Read her powerful story.

Meet Justin, a Nebraska father and husband living with Congenital Erythropoietic Porphyria (CEP). Discover his lifelong journey from childhood diagnosis through managing severe sun sensitivity, scarring, and vision loss, to building a family and finding purpose in advocacy.

Diagnosed with Congenital Erythropoietic Porphyria (CEP) as a baby, Fide Mirón shares her lifelong battle with pain, loss, and resilience—and how she turned her suffering into advocacy for others living with rare diseases.

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.

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.

Elsie has been living with congenital erythropoietic porphyria (CEP), a rare condition that makes her extremely sensitive to sunlight.