SAVE THE DATE: Montreal Patient and Caregiver Meeting


The Canadian Association of PNH Patients invites the Canadian community of patients and caregivers to join us at our upcoming meeting on Saturday, September 24, 2016 in Montreal.

We are pleased to announce that our next meeting for Canadian patients and caregivers will be held in Montreal. In 2015, we held a similar meeting in Toronto for families in Ontario, and for this upcoming meeting, we would like to extend an invitation to those in Quebec and Atlantic Canada.

This informative and educational meeting will feature a presentation and Q&A by a local PNH specialist, an update on the latest research into treatments for PNH, tips on travelling with PNH, and other informative discussions inspired by our Guide to Living Well with PNH.  It’s a great opportunity to connect with others living with this rare disease and share your stories and experiences!

There will also be a discussion on provincial access to PNH treatment, and guidance for participants on how to advocate for the best available care. We strongly urge patients to attend with a caregiver or family member in order to optimize your experience at this meeting.

Suspect PNH? Recently diagnosed? Living well with PNH?
Need to travel, but not sure how to access treatment while abroad?
This meeting will have something for everyone.

Thinking of attending?
Requests for travel subsidies will be considered. Please send an email to to make your request if you are considering attending.

How do I register?
Watch our website ( for more information on how to register for this informative session.

The Canadian Association of PNH Patients was formed in 2009 with a mission to connect Canadians affected by Paroxysmal Nocturnal Hemoglobinuria (PNH) 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.

Kind regards,

Barry Katsof
Canadian Association of PNH Patients

Sébastien Legault
Quebec Association of PNH Patients