Our Mission
Patients in Canada deserve world-leading care that extends over case recognition, diagnosis and treatment follow-up.
We are a network of experts across Canada involved in the care of patients living with paroxysmal nocturnal hemoglobinuria (PNH). We are dedicated to diagnosis and management of patients, as well as advancing education and research to improve care across the disease spectrum.
The Canadian PNH Network is a collection of paroxysmal nocturnal hemoglobinuria (PNH) experts dedicated to the diagnosis, treatment, management, education and investigation of PNH.
Patients in Canada deserve world-leading care that extends over case recognition, diagnosis and treatment follow-up.
All centres in the Canadian PNH Network remain pleased to offer a shared care approach for the clinical management of patients with PNH.
Contact your local PNH Expert for additional PNH education resources, including slide presentations.
Paroxysmal Nocturnal Hemoglobinuria (PNH): A progressive, life-threatening disease that causes thrombosis, end organ damage and impaired quality of life.
PNH is an acquired disease that leads to the hemolysis of red blood cells due to uncontrolled complement activation.
Connect with your local PNH Expert for any questions regarding the diagnosis, treatment or management of PNH. We are here to help.
Consider linking them to the PNH network.
We are pleased to offer a shared care approach for the clinical management of PNH patients where this is the preference of the referring clinician.
Patient groups
The PNH Registry
More than 267 PNH patients strong – and counting
The PNH Registry is an international, observational and noninterventional study collecting safety, effectiveness and QoL data on PNH patients.
Unite with a global community of physicians in contributing to the largest, most comprehensive patient registry. Those eligible for enrolment include all patients who have been newly or previously diagnosed with PNH or have evidence of positive PNH cells.
• All physicians managing patients with PNH, regardless of treatment approach, are encouraged to participate.
Contribute to treatment objectives, practice patterns and best practices.
• An invaluable opportunity to increase understanding of the natural history of PNH and the safety and efficacy of treatments.
Support scientific collaboration in the PNH community.
• Offers the international community greater insight into an uncommon disease with potentially devastating consequences.
PNH symptom incidence rate
Early intervention is critical
Connect with your local PNH Expert for any questions regarding the DIAGNOSIS, treatment, or management of PNH. We are here to help.
Screening is critical. Early intervention is paramount.
International Clinical Cytometry Society Guidelines and the Canadian PNH Network recommend evaluation of the following higher-risk patient populations.
*0.01% PNH cell threshold. Includes all MDS subtypes.
†Includes all MDS subtypes.
AA=Aplastic anemia; RA-MDS=Refractory anemia myelodysplastic syndromes; PNH=Paroxysmal nocturnal hemoglobinuria
Study description: An analysis of the incidence of PNH clones in 6897 patients recommended for testing according to guidelines from the ICCS and the IPIG.
Rule PNH in or out using high-sensitivity flow cytometry and comprehensive clinical assessment.
Together, we can save lives.
Our specialized network offers education, guidance and resources:
simply contact your local centre expert.
BC
Tom Nevill (Vancouver)
Alberta
Monika Oliver (Edmonton)
Jennifer Grossman (Calgary)
Ontario
Ian Chin-Yee (London)
Brian Leber (Hamilton)
Peter Gross (Hamilton)
Christopher Patriquin (Toronto)
Kevin Kuo (Toronto)
Signy Chow (Toronto)
Rob Sutherland (Toronto)
Quebec
Marc Bienz (Montreal)
Thomas Kiss (Montreal)
Catherine Sperlich (Greenfield Park)
Danièle Marceau (Lévis)
Nova Scotia
Sue Robinson (Halifax)
Newfoundland
Kuljit Grewal (St. John’s)
References