About us

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. The organization also provides support to caregivers, and works to increase awareness and understanding of PNH.

Paroxysmal Nocturnal Haemoglobinuria (PNH) is a very rare and debilitating disease of the bone marrow that affects the blood and major organs. It is a chronic, life-threatening illness and can have devastating effects upon a patient physically, mentally and emotionally. This website represents a growing community of patients, caregivers and members of the medical community who wish to support and improve the quality of life of those with PNH.

The Association is generously supported by corporate and private donors, including unrestricted educational grants from Alexion Pharmaceuticals, Apellis Pharmaceuticals, and Ra Pharmaceuticals, Inc.

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Apellis Reports Positive Results from Phase 3 Study Comparing Pegcetacoplan (APL-2) to Eculizumab (Soliris) in PNH Patients

January 16, 2020

Apellis Pharmaceuticals, a biopharmaceutical company focused on the development of novel therapeutic compounds to treat diseases through the inhibition of the complement system, announced positive results from the Phase 3 PEGASUS study evaluating pegcetacoplan (APL-2) in adults with PNH.

Top-line data show that pegcetacoplan met the study’s primary efficacy endpoint, demonstrating superiority to eculizumab with a significant improvement in adjusted means of 3.8 g/dL of hemoglobin at week 16. The safety profile of pegcetacoplan was comparable with eculizumab in this study.

Click here to read the company’s full press release.

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