LEARN,
CONNECT,and find support
LEARN,
CONNECT,and find support
LEARN,
CONNECT,and find support
Connect with the EPP & XLP community
While erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP) are rare diseases, there is a strong, thriving community of patients, advocates, and specialists that can offer support and camaraderie.
Below, you'll find several groups and organizations that can empower you with expert guidance, valuable resources, and other people who truly understand your journey.
While erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP) are rare diseases, there is a strong, thriving community of patients, advocates, and specialists that can offer support and camaraderie. Below, you’ll find several groups and organizations that can empower you with expert guidance, valuable resources, and other people who truly understand your journey.
American Porphyria Foundation
The American Porphyria Foundation (APF) has been a beacon for the porphyria community since 1983, working tirelessly to improve the lives of patients and families through education, advocacy, support services, and research.
Resources: Support and Assistance, Member Stories, Events
United Porphyrias Association
Founded by patient advocates and porphyria experts, the United Porphyrias Association (UPA) is dedicated to enhancing the quality of life for those affected by porphyria. The UPA can help you find an EPP or XLP specialist, offers one-to-one peer support, hosts in-person and online events, and runs an active Facebook group.
Resources: Specialist Finder, 1:1 Peer Support, Events, Facebook Group
Shadow Jumpers
Shadow Jumpers helps families with rare photosensitive conditions by making homes UV-safe, funding sun-proof vacations, providing medical bill relief, and running a UV-protective clothing drive. Annual events include Sun Escape, a free camp that offers fun, sun-safe activities, and Spin Away the Sun, a bike-a-thon to raise money for the important work they do.
Resources: Clothing Drive, Sun Escape Camp, Spin Away the Sun
National Organization for Rare Disorders
National Organization for Rare Disorders (NORD) was founded after the passage of the Orphan Drug Act of 1983 (ODA) to formalize the coalition of patient advocacy groups that were instrumental in passing that landmark law. Since then, NORD has been a national steward and a steadfast partner helping those who battle and care for rare disease feel seen, heard, supported, and connected.
The groups and associations listed here are not all of the organizations that support people living with EPP or XLP. This list of organizations is provided for your information only and is not an endorsement, referral, or recommendation from Disc Medicine.