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Rare Disease Organizations

Though PNH affects a relatively small number of patients, strong patient communities have formed around the world with the same goal of advocating for access to life-saving treatments and raising awareness for rare conditions. Patients are banding together in Canada as well as internationally to raise awareness for PNH among the general public and members of government. Click on the links below to visit the online presences of these Canadian and international organizations, to help build a network of connected and engaged patients and caregivers.


Rare Disease Organization Websites:


CORD – Canadian Organization for Rare Disorders

AAMAC – Aplastic Anemia and Myelodysplasia Association of Canada



NORD – National Organization for Rare Disorders (United States)

AA&MDSIF – Aplastic Anemia & MDS International Foundation, Inc. (United States)


International PNH Patient Websites:

PNH Support Group – An Online Support Community

International PNH Interest Group

PNHSAA – PNH Support Association of Australia Inc. (Australia)

Association HPN France – Aplasie Médullaire (France)

PNH – Paroxysmale Nächtliche Hämoglobinurie (Germany)

HematosLife – A rare blood disease community (Netherlands)