We are pleased to formally invite you to our first meeting for patients and caregivers in B.C. on Saturday, October 25, 2014, from 9:00 a.m – 3:00 p.m., in Vancouver.
We have planned the day with you, the patient and your family, in mind! Our goal is to continually provide educational resources to help support patients, families and caregivers affected by PNH.
Please join us as we bring our community together for a welcome lunch, and a full afternoon of informative discussion and workshops.
Presentations and discussions will include:
- An introduction to the Canadian Association of PNH Patients and its accomplishments and offered resources
- An opportunity for patients to share experiences with their respective journeys with PNH
- A clinical presentation on PNH, its tests and treatments, and Q&A led by Dr. Tom Nevill, hematologist at Vancouver General Hospital
- Information on living well with PNH, inspired by the Guide to Living Well with PNH
- A conversation about issues B.C. patients may be experiencing in accessing treatment
- An introduction to advocacy to government and through the media
Registration is mandatory, but attendance is free for patients, families and caregivers. The cost of out-of-town travel and hotel accommodation on the night of Saturday, October 25, 2014 will be covered for patients and one family member/caregiver.
Please fill out the registration form and either fax to 1-866-803 6879 or e-mail to zilla@pnhca.org by Friday, October 17.
If you require further information, please contact Zilla Dias at 905-510-1335 or zilla@pnhca.org.
We look forward to seeing you and your family at the meeting!
Kind regards,
Barry Katsof
Founder and President
Canadian Association of PNH Patients