Support Programs for Patients
With PNH

Here are some organizations that offer information, advice, and support. Some of these organizations also provide updates on PNH community events:

Aplastic Anemia & MDS International Foundation (AA & MDSIF): A nonprofit resource for assistance, advocacy, and support for patients living with AA, MDS, and PNH.

National Institutes of Health: Part of the US Department of Health and Human Services, and a trusted source of research.

National Organization for Rare Disorders (NORD): Dedicated to helping people with rare disorders like PNH.

OneSource™: Registered Nurse Case Managers can help answer questions about PNH and provide personal support for people living with PNH and their caregivers. 1-888-765-4747

The PNH Research and Support Foundation: Helps raise funds for PNH research and may offer limited financial support for PNH-related expenses.

PNH Support Group: An online support group for people with PNH.