I’m Aware That I’m Rare: Darren Bell (239)

phaware global association®
5 min readApr 19, 2019

The phaware® interview

Darren Bell is a former PHA Canada President and Chair of the Board of Directors. One of PHA Canada’s founding board members, Darren joined the PH community when his son Dylan was diagnosed with IPAH in 1998. Dylan lost his battle with PAH in 2007 at the age of 12, two years after his younger brother Hunter passed away from an acute intestinal illness at the age of 7.

My name is Darren Bell. I am a founding board member of PHA Canada. I have been involved with the organization since its inception in 2008. I first came into the pulmonary hypertension arena via my son being diagnosed. Dylan was three years old, diagnosed in 1998, ended up going to see Dr. Robyn Barst in New York. He was diagnosed and subsequently put on IV prostacyclin — Flolan.

We went to many US conferences, which were great. I think we attended six conferences and really saw the sense of community and also identified that that community, or that need for community, existed in Canada and was not currently something that the landscape had. There were support groups across Canada, there were associations or charities set up provincially within a couple provinces. But we as a collective group of people from across Canada that were either caregiver, supporters or patients, decided that we should come together and form a national organization that was really focused on the patient side of things, rather than, at that time, research. We believe that connecting the patients [along] with the research component, obviously, providing support, and advocating for patients was going to be our primary objective moving forward, and thus PHA Canada was formed.

I’ve been proud to be a member of the board ever since, and it’s great to see how the organization has grown, the size of the conferences we hold has grown. Not that I want to see it grow, obviously, for the patient-members, but it’s great to see that more people are aware that they can connect, and they’re not alone as they face this disease.

--

--

phaware global association®

Are You #phaware? Pulmonary hypertension (PH) is a rare, life-threatening disease affecting the arteries of the lungs. www.phaware.global