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.

Do you know PNH when you see it?

Learn more about PNH

Find a PNH Centre of Expertise near you!

Find your local PNH expert

Do you have a PNH patient?

Consider linking them
to the PNH Network

Who we are

The Canadian PNH Network is a collection of paroxysmal nocturnal hemoglobinuria (PNH) experts dedicated to the diagnosis, treatment, management, education and investigation of PNH.

Our Mission

Patients in Canada deserve world-leading care that extends over case recognition, diagnosis and treatment follow-up.

Our Vision

  • To maintain the highest standard of clinical practice in the management of PNH.
  • To provide continuing health education on the evolving management of PNH patients.
  • To participate in global research to gain further understanding of the natural history of PNH.

Service We Provide

  • State-of-the art methods in flow cytometry for PNH diagnosis.
  • Treatment and follow-up of PNH patients.
  • Continuing health education to the broader community and knowledge translation.
  • Enrolment into the global PNH registry to help provide greater insight into this serious disease.

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.

What is PNH?

Paroxysmal Nocturnal Hemoglobinuria (PNH): A progressive, life-threatening disease that causes thrombosis, end organ damage and impaired quality of life.

PNH Red Blood Cell (RBC)

Complement Attack

PNH RBC Lysis (Hemolysis)

PNH is an acquired disease that leads to the hemolysis of red blood cells due to uncontrolled complement activation.

  • PNH is caused by an acquired somatic mutation of the PIG-A gene which leads to a lack of glycosylphosphatidylinositol-linked surface proteins, including the complement regulatory proteins CD55 and CD59.
  • RBCs deficient in CD55 and CD59 are susceptible to chronic intravascular complement-mediated hemolysis.
  • Hemolysis leads to the release of hemoglobin and nitric oxide scavenging, both of which are involved in the underlying consequences of PNH.
  • Chronic complement-mediated hemolysis is the underlying cause of progressive morbidities and mortality in PNH.

Connect with your local PNH Expert for any questions regarding the diagnosis, treatment or management of PNH. We are here to help.

Do you have a PNH patient?

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.

Chronic complement-mediated hemolysis is the underlying cause of progressive morbidities and mortality in PNH 

PNH symptom incidence rate 

Early intervention is critical 

  • Up to 35% of PNH patients may die within 5 years of diagnosis without targeted treatment.
  • A full clinical assessment consisting of patient history, physical and laboratory values is crucial for diagnosis and ongoing monitoring of PNH.
  • Reported symptoms may vary between visits and patients.
  • It is important to discuss symptomatology at each visit to track disease progression.

Connect with your local PNH Expert for any questions regarding the DIAGNOSIS, treatment, or management of PNH. We are here to help.

To C.A.T.C.H. PNH, know who’s at risk 

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.

  • Identification of PNH cells has important prognostic and therapeutic implications.
  • ICCS guidelines and the International PNH Interest Group (IPIG) recommend continued monitoring of patients at higher risk for PNH.
  • The availability of an effective PNH treatment option warrants testing in higher risk patient populations.

PNH Resources 

A detailed look at how to C.A.T.C.H. PNH


Standardized Flow Cytometry Report


Initial evaluation checklist: Patient with newly diagnosed PNH 


Follow-up of PNH patients after initial workup


Canadian PNH Centres of Expertise 

Together, we can save lives.  

Our specialized network offers education, guidance and resources:
simply contact your local centre expert. 


Tom Nevill (Vancouver)

  • Vancouver General Hospital
  • (604) 875-4863


Monika Oliver (Edmonton) 

  • University of Alberta Hospital
  • (780) 735-8106

Jennifer Grossman (Calgary)

  • University of Calgary
  • (403) 944-5222


Ian Chin-Yee (London)

  • London Health Sciences Centre
  • (519) 685-8479

Brian Leber (Hamilton)  

  • Juravinski Hospital
  • (905) 389-4411 ext. 76384

Peter Gross (Hamilton)

  • McMaster University
  • (905) 521-2100 ext. 40779

Christopher Patriquin (Toronto) 

  • Toronto General Hospital/University Health Network
  • (416) 340-5233

Kevin Kuo (Toronto)  

  • Princess Margaret Cancer Centre/University Health Network
  • (416) 340-5233

Signy Chow (Toronto) 

  • Sunnybrook Health Sciences Centre
  • (416) 480-4757

Rob Sutherland (Toronto) 

  • University of Toronto
  • (905) 829-1789


Marc Bienz (Montreal)

  • Jewish General Hospital
  • (514) 340-8222, ext. 28796

Thomas Kiss (Montreal) 

  • Hôpital Maisonneuve-Rosemont
  • (514) 252-3404

Catherine Sperlich (Greenfield Park) 

  • Hôpital Charles-Lemoyne
  • (450) 466-5065

Danièle Marceau (Lévis)

Charles Lafrance (Lévis)

  • Hôtel-Dieu de Lévis
  • (418) 801-7453

Nova Scotia 

Sue Robinson (Halifax) 

  • Queen Elizabeth II Health Sciences Centre
  • (902) 473-2394


Kuljit Grewal (St. John’s) 

  • The General Hospital
  • (709) 777-7061
All PNH Network Centres have experience in managing patients living with PNH.