The Pulmonary Hypertension Society of Canada (PHSC), was founded in 1999 by Ontario lawyer Leon Paroian, a few years after his daughter Sherri Lynn Oliver was diagnosed with pulmonary hypertension (PH).
In 2006, provincial PH organizations began discussing the need for a strong, unified presence at the national level. A pivotal meeting in Vancouver in 2007 set out a framework for a renewed national organization. With Leon suffering through illness of his own, he agreed that new leadership was necessary in order for the dream of a strong national organization to become a reality.
On April 1, 2008 the PHSC Board of Directors, including Leon, resigned their posts and a new Board with representation from across Canada was elected. The Board elected Darren Bell as the new Chair and moved the organization’s headquarters to Vancouver, BC.
Taking the lead from the network of national PH associations around the world, PHSC was renamed the Pulmonary Hypertension Association of Canada (PHA Canada). Like other PH associations around the world, PHA Canada set a course to work collaboratively with patients, caregivers, families, and medical professionals to create a better life for all those affected by PH.
PHA Canada’s contribution to the rare disease community was immediate. In May 2008, Darren Bell’s father, Don Bell, who was Member of Parliament for North Vancouver, introduced a private members motion (M426) in the House of Commons in support of PH and other rare disorders. The motion called on the government to “respond specifically to the challenges faced by Canadians with rare diseases and disorders” and received the support of all parties except the Bloc Québécois, which cited a need for special recognition for Quebec. Spearheaded by the Canadian Organization of Rare Disorders (CORD), an umbrella organization of which PHA Canada remains a member today, the motion led to the development of a Canadian Rare Disease Strategy, which CORD officially unveiled in 2015.
PHA Canada continues to advocate for the needs of PH patients, with emphasis on the funding of PH therapies. An early victory took place in the province of Ontario, where Ministry of Health policies concerning the funding of PH treatments were threatening the lives of patients by proposing the implementation of a “stepped approach” to therapy. Today, PHA Canada engages with provincial Health Ministries on issues concerning access to the best available PH treatments, including ensuring that the needs of patients and caregivers are considered during the assessment of new therapies. Supported by staff and volunteers, PHA Canada’s constituents are encouraged to become actively involved in advocating for better outcomes for PH patients and their families.
PHA Canada’s network has grown with each passing year. Through four National Conferences and ongoing support for annual regional events and local support groups, PHA Canada continues to bring people together to improve the lives of everyone affected by PH.
PHA Canada is also raising public awareness of the disease through media campaigns and support for community-based events and activities. For instance, in 2014, PHA Canada launched its Sometimes It's PH campaign to educate GPs and other doctors about the signs and symptoms of PH, in order to encourage earlier diagnosis and treatment.
In the midst of providing a range of support, education, advocacy, and awareness programs, PHA Canada never forgot the importance of funding PH research. In 2015, thanks to an initial donation made by the Paroian family, PHA Canada initiated a research scholarship fund to support research trainees in Canada to actively pursue pulmonary hypertension research. In 2016, in honour of the Paroians' dedication to PH research, the first two $10,000 PHA Canada Paroian Family PH Research Scholarships were awarded to young researchers in Ontario and Quebec. Community fundraising efforts have escalated since then, resulting in the creation of a second scholarship award: the PHA Canada Mohammed Family PH Research Scholarship. As of the end of 2019, PHA Canada is proud to have awarded $90,000 in scholarships to eight promising PH research trainees.