contact@pnhca.org

List of Canadian PNH Doctors

The following doctors are Canadian, board certified hematologists with experience in managing patients diagnosed with PNH.  The information below is provided for informational purposes only. Please consult with your medical practitioner for further information regarding your personal circumstances.

Financial Support

The Canadian Association of PNH Patients strives to assist patients in accessing the best possible care and treatment to help them live well with the disease. The resources below are provided to help Canadian PNH patients secure access to treatment with eculizumab.

OneSource Patient Support
1-888-765-4747

If you are considering eculizumab, or are already on treatment, we recommend connecting with OneSource™ at 1-888-765-4747. A OneSource nurse case manager will help you navigate insurance or funding issues for eculizumab, and determine with your doctor whether or not you are eligible for eculizumab through your private insurance plan or government insurance program.

Your OneSource nurse case manager will also answer any questions about eculizumab infusions you may have, as well as provide ongoing support.

Provincial Drug Plans

Eligibility criteria for public funding for eculizumab may vary from province to province. For information on your province’s drug program, click on the appropriate link below.

 

We hope you enjoy these issues of the PNH Review – the newsletter of the Canadian Association of PNH Patients!

Click here to download

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.

CORD – Canadian Organization for Rare Disorders
RQMO –  Le  Regroupement Québécois des Maladies Orphelines
AAMAC – Aplastic Anemia and Myelodysplasia Association of Canada

OneSource Treatment Support – 1-888-765-4747

Physician Organizations:

NORD – National Organization for Rare Disorders (United States)

PNH Support Group – An Online Support Community
International PNH Interest Group
PNHSAA – PNH Support Association of Australia Inc. (Australia)
European Network for Rare and Congenital Anaemias (ENERCA)
EURORDIS – Rare Diseases Europe
Association HPN France – Aplasie Médullaire (France)
Aplastische Anämie – PNH (Germany)
Aplastische Anämie e.V. (Germany)
HematosLife – A rare blood disease community (Netherlands)
Stichting AA & PNH Contactgroep (Netherlands)
PNH Support Association of NZ (New Zealand)
Slovensko združenje bolnikov z limfomom in levkemijo (Slovenia)
Asociación de hemoglobinuria paroxística nocturna (Spain)
AIEPN – Associazione Italiana Emoglobinuria Parossistica Notturna (Italy)
PNH National Service (U.K.)
PNH Support (U.K.)

About PNHCA

The Canadian Association of PNH Patients is a not-for-profit Canadian organization formed in 2009. The mission of the organization is to connect Canadians affected by Paroxysmal Nocturnal Haemoglobinuria and advocate for the best possible care for patients and ensure they are equipped with the most current tools and information to help them live well with the condition.

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