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SAVE THE DATE: Vancouver Patient and Caregiver Meeting

We are pleased to announce that our first meeting for patients and caregivers in B.C. will be held in Vancouver on Saturday, October 25, 2014. This informative and educational meeting will feature insights and presentations by a local PNH specialist, and information and discussion inspired by our Guide to Living Well with PNH.

Discussion topics will include the physical, mental and emotional journey with PNH, and individual experiences living with the condition. 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, with a goal of ensuring that PNH patients in B.C. continue to have access to life-saving PNH medication. 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 for years? Having trouble accessing treatment? This meeting will have something for everyone. From B.C. and thinking of attending?  Requests for travel subsidies will be considered. Please send an email at to make your request if you are considering attending.

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