All eight types of Porphyria are among the 7,000 known rare diseases. About 80% are genetic and 50% affect children.
Together, 30 million Americans live with a rare disease. This does not include the families and caregivers who are also impacted.
The APF stands with the National Organization for Rare Disorders (NORD) in the fight for “zebras” to drive more research, innovation, and increased access to treatment.
We invite you to share your porphyria story right alongside millions of others on February 29th.