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Useful Links

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 web sites of these Canadian and international organizations, and help build a network of connected and engaged patients and caregivers.
Rare Disease Organization Websites:
OneSource Treatment Support – 1-888-765-4747
Physician Organizations
International PNH Patient Websites: