Community and Support

Support services and groups

We want to help people living with PNH and their caregivers get the support they need. Check out these services and resources that may help you connect with others, learn more about PNH, and get answers to your questions.

Connect with the community

People living with PNH and other rare diseases can have active lives. Find an upcoming event in your area to meet other people who understand what you're going through and want to share in their journey.

Upcoming events



Join OneSource™, a complimentary, personalized support program for people living with PNH and their caregivers. The program offers disease information, community resources, and ongoing engagement. Call to sign up or learn more.

CALL 888-765-4747

CALL 888-765-4747

Advocacy groups

Aplastic Anemia (AA) and MDS International Foundation (MDSIF)

These groups offer assistance, advocacy, and support for patients living with multiple diseases, including PNH.

Learn More

National Organization for Rare Disorders (NORD)

This organization offers a variety of support and services, including medication assistance, hosting meetings, and spreading awareness about rare diseases.

Learn More