It’s natural to feel alone when you are diagnosed with
, because it is a rare disease. Talking with others who have shared similar experiences and who understand can make a difference. Support groups may help you overcome your sense of isolation. Here are some organizations that offer information, advice, and support.
The PNH Patient Community:
The PNH Patient Community is a patient support site in partnership with National Organization for Rare Disorders (NORD) and the Aplastic Anemia & MDS International Foundation (AA & MDSIF). This site is dedicated to providing PNH patients access to other patients as well as many free events offered throughout the country.
National Organization for Rare Disorders (NORD):
A not-for-profit organization dedicated to helping people with rare disorders, such as PNH.
Aplastic Anemia & MDS International Foundation (AA & MDSIF):
A nonprofit resource for assistance, advocacy, and support for patients living with aplastic anemiaAnemia that results from the failure of the bone marrow to produce red and white blood cells as well as platelets.
(AA), myelodysplastic syndromesA condition in which there’s a problem with the way bone marrow makes blood cells. A small percent of PNH patients also have MDS.
(MDS), and PNH.
National Institutes of Health:
Part of the US Department of Health and Human Services, and a
trusted source of research.
OneSource™: Nurse Case Managers can help answer questions about PNH and provide personal support for people living with PNH and their caregivers. Call 1.888.765.4747, or e-mail, with no obligation.
The PNH Research and Support Foundation:
A volunteer-based organization that helps raise funds for PNH research and offers limited financial support for PNH-related expenses to qualified applicants.
PNH Support Group:
An online support group for people with PNH.
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how a PNH support group helped Victor when he was struggling with his PNH.
how OneSource helped Batina.
more about considerations for patients with aplastic anemia or myelodysplastic syndrome and PNH from Dr. Jack Goldberg, a clinical professor of medicine.