Archive for September, 2009

September 25-27, 2009 – Eastern Canada PH Conference

The 1st Eastern Canada Pulmonary Hypertension Conference

Date: September 25-27, 2009
Location: Loews Hotel Vogue in Montreal, Quebec
Register here: 1st Eastern Canada PH Conference

PHA Canada and HTAP Quebec are thrilled to announce that the first ever Eastern Canada PH Symposium will be held on the weekend of September 25-27 in Montreal, Quebec.

The two-day event will begin on Friday night with a special outing and dinner with specialist PH physicians from across Canada. The Conference will continue with keynote and breakout sessions on Saturday and Sunday. To register and for full details visit PHA Canada’s 1st Eastern Canada PH Conference. We hope to see you there!

Lecturers will include Canada’s top PH specialists as well as nurse coordinators from various PH centres across Canada and patient speakers. Scheduled topics include: basic research in PH; new frontiers; nutrition, diet and exercise; and many others. A workshop on advocating for oneself and support group style sessions will also be held.

Patients gather in Montreal for two-day Conference

Charlie Fidelman, The Gazette, September 25, 2009

They’re trickling in from all over Canada, some in scooters and wheelchairs, lugging oxygen tanks, vials of medication and intravenous 24-7 drips kept on ice.

They’re all struggling with “just being able to breathe.” About 200 patients and their families are in Montreal to see what medical specialists at a two-day conference have found about the disease that takes their breath away.

A rare and devastating disorder that causes constriction of the blood vessels in the lungs and around the heart, pulmonary hypertension – affects between 2,000 to 5,000 Canadians. There is no cure.

So they’re also here to build a community of hope in the face of bad outcomes, said Darren Bell, whose son Dylan died in July two years ago, a day after his 12th birthday.

Dylan used to carry a backpack that pumped vessel-dilating drugs into his heart through a tube in his chest.

After his son died, Bell became president of the newly formed national organization, PHA Canada, whose mission is to unite Canada’s fragmented patient landscape and promote greater awareness within the medical community.

“If you have a rare disease in a small town, it’s unlikely to find someone else with the disease or for people to be able educate themselves,” said Bell, of Vancouver, whose association last year prompted Parliament adopt a motion to create a national policy for rare diseases.

Click image to view larger