PHA Canada is committed to working with and for all Canadians affected by pulmonary hypertension and is proud to be the national voice of Canada’s PH community. True to the vision of our founders in 2008, PHA Canada strives to represent and engage those affected by PH in every corner of the country so that they feel heard, informed, and supported no matter where they live. (Click on the graphics to see them in full page) PHA Canada's Roots In the 1990s, informal networks of PH patients and families started to form, leading to the emergence of provincial/regional PH organizations nationwide. These organizations provided peer support to local patients (primarily PAH patients) and their families. The Pulmonary Hypertension Society of Canada (PHSC) was founded in 1999 by Leon Paroian, an Ontario lawyer whose daughter Sherri Lynn Oliver had been diagnosed with pulmonary arterial hypertension (PAH). The PHSC aimed to fund research in the hopes of finding a cure. In 2006, PH organizations in BC, Alberta, Ontario, and New Brunswick began discussing the need for a strong and unified presence at the national level. A pivotal meeting in Vancouver in 2007 set out the framework for a renewed national organization built on the foundations of the PHSC. With Leon suffering through an illness of his own, he agreed that new leadership was necessary for the dream of a united national organization to become a reality. A New National Association In 2008, the PHSC Board of Directors, including Leon, stepped down, and a new Board with representation from across Canada was elected. The new Board elected Darren Bell as the Chair and relocated the organization’s headquarters to Vancouver, BC. Following the example of PH associations worldwide, PHSC changed its name to the Pulmonary Hypertension Association of Canada (PHA Canada). The first part-time employee – National Manager Angie Knott – was hired and PHA Canada set out to work cooperatively with patients, caregivers, families, and medical professionals to create a better future for those affected by PH. A Tradition of Advocacy, Support & Awareness Since its formation, PHA Canada has been committed to ensuring that all PH patients have access to the best possible care and treatment at diagnosis and beyond. In May 2008, Darren Bell's father, Don Bell, a Member of Parliament for North Vancouver, introduced a private members motion in the House of Commons to support PH and other rare disorders. This process eventually led to the development of a Canadian Rare Disease Strategy, unveiled by the Canadian Organization of Rare Disorders (CORD) in 2015. Meanwhile, in 2015 new PAH treatments were becoming available, and PHA Canada launched the Take Action PAH campaign to ensure Canadian patients in need would have access to optimal treatment regardless of where they lived or whether they had private insurance. Working with the PH community, we have had significant successes in ensuring PAH patients have access to all Health Canada-approved treatments. Yet, gaps remain, and more new treatments are on the horizon. In 2023, PHA Canada, CORD, and other patient organizations welcomed the federal government's announcement to allocate up to $1.5 billion over three years to implement the Rare Disease Drug Strategy. However, further actions are still needed to reduce delays to an accurate diagnosis, increase investments in research and innovation, and provide meaningful support to patients, families, and communities affected by rare diseases. It is organizations like PHA Canada that provide the support needed by rare disease patients and their families. PHA Canada’s growing list of resources provides information and support relevant to a diverse range of PH journeys and experiences. Connections Magazine, distributed to hundreds of patients twice a year, brings together the Canadian PH community to inform, support, and celebrate one another. Educational sessions, videos, and print resources available on and offline provide easy access to valuable information to help people understand their disease and better manage daily life with PH. Community spaces, gatherings, and conferences reduce isolation, build relationships, and nurture a strong support network across the country. The need to reduce social isolation became even more significant in 2020 due to the COVID pandemic. PHA Canada launched new support programs to respond to the fear, anxiety, and intense isolation brought on by the pandemic. These programs embraced technology and ushered in a new era of virtual programming for PHA Canada. PHA Canada is also using technology and social media to build awareness of pulmonary hypertension and the realities faced by those affected by PH. Leveraging our robust online presence, PHA Canada amplifies your voices and stories daily. Our annual awareness campaigns for World PH Day and PH Awareness Month are known to #PaintCanadaPurple while highlighting the impacts of PH on Canadians. One of the most significant impacts of PH continues to be delays in diagnosis. Research conducted by PHA Canada in 2021 indicates that it still takes more than two years for 50% of patients to be accurately diagnosed with PH in Canada. Earlier diagnosis is essential for ensuring patients receive appropriate care and treatment. PHA Canada’s Sometimes It’s PH campaign educates primary care physicians and other health care providers about PH's signs, symptoms, and risk factors and helps patients get referred to the right place for treatment and support. Hope for a Future Free of PH Since the beginning, PHA Canada’s mission has been to empower the PH community through support, education, advocacy, awareness, and research. Over the years, our commitment to research has grown substantially in response to the PH community’s calls for more significant investments in PH research. In 2015, thanks to an initial donation made by the Paroian family, PHA Canada initiated a research scholarship program to support trainees in Canada to pursue pulmonary hypertension research. In 2016, in honour of the Paroian Family’s dedication to PH research, PHA Canada awarded the first two Paroian Family PH Research Scholarships to young researchers in Ontario and Quebec. Community fundraising efforts escalated, and since then, two additional scholarships have been created: the Mohammed Family PH Research Scholarship and the Loretta Chu Memorial PH Research Scholarship. As of the end of 2022, PHA Canada is proud to have awarded $150,000 in scholarships to thirteen promising PH research trainees in Canada. In 2022, PHA Canada also launched a multi-year initiative to increase PH research capacity in Canada. Patients are becoming increasingly important partners not only in conducting research (since research can’t occur without patient participation) but also in deciding what research questions should be pursued, how studies should be designed, and what outcomes need to be measured. The Research Capacity Building Project will empower patients to be more active participants and decision-makers throughout the research process. It also aims to improve coordination and collaboration among PH researchers and increase access to critical new patient data sources by creating a Canadian PH biobank. Do you want to be part of PHA Canada’s vision of a better future for Canadians affected by PH? Donate today and be part of history in the making!
PHA Canada's Roots In the 1990s, informal networks of PH patients and families started to form, leading to the emergence of provincial/regional PH organizations nationwide. These organizations provided peer support to local patients (primarily PAH patients) and their families. The Pulmonary Hypertension Society of Canada (PHSC) was founded in 1999 by Leon Paroian, an Ontario lawyer whose daughter Sherri Lynn Oliver had been diagnosed with pulmonary arterial hypertension (PAH). The PHSC aimed to fund research in the hopes of finding a cure. In 2006, PH organizations in BC, Alberta, Ontario, and New Brunswick began discussing the need for a strong and unified presence at the national level. A pivotal meeting in Vancouver in 2007 set out the framework for a renewed national organization built on the foundations of the PHSC. With Leon suffering through an illness of his own, he agreed that new leadership was necessary for the dream of a united national organization to become a reality. A New National Association In 2008, the PHSC Board of Directors, including Leon, stepped down, and a new Board with representation from across Canada was elected. The new Board elected Darren Bell as the Chair and relocated the organization’s headquarters to Vancouver, BC. Following the example of PH associations worldwide, PHSC changed its name to the Pulmonary Hypertension Association of Canada (PHA Canada). The first part-time employee – National Manager Angie Knott – was hired and PHA Canada set out to work cooperatively with patients, caregivers, families, and medical professionals to create a better future for those affected by PH. A Tradition of Advocacy, Support & Awareness Since its formation, PHA Canada has been committed to ensuring that all PH patients have access to the best possible care and treatment at diagnosis and beyond. In May 2008, Darren Bell's father, Don Bell, a Member of Parliament for North Vancouver, introduced a private members motion in the House of Commons to support PH and other rare disorders. This process eventually led to the development of a Canadian Rare Disease Strategy, unveiled by the Canadian Organization of Rare Disorders (CORD) in 2015. Meanwhile, in 2015 new PAH treatments were becoming available, and PHA Canada launched the Take Action PAH campaign to ensure Canadian patients in need would have access to optimal treatment regardless of where they lived or whether they had private insurance. Working with the PH community, we have had significant successes in ensuring PAH patients have access to all Health Canada-approved treatments. Yet, gaps remain, and more new treatments are on the horizon. In 2023, PHA Canada, CORD, and other patient organizations welcomed the federal government's announcement to allocate up to $1.5 billion over three years to implement the Rare Disease Drug Strategy. However, further actions are still needed to reduce delays to an accurate diagnosis, increase investments in research and innovation, and provide meaningful support to patients, families, and communities affected by rare diseases. It is organizations like PHA Canada that provide the support needed by rare disease patients and their families. PHA Canada’s growing list of resources provides information and support relevant to a diverse range of PH journeys and experiences. Connections Magazine, distributed to hundreds of patients twice a year, brings together the Canadian PH community to inform, support, and celebrate one another. Educational sessions, videos, and print resources available on and offline provide easy access to valuable information to help people understand their disease and better manage daily life with PH. Community spaces, gatherings, and conferences reduce isolation, build relationships, and nurture a strong support network across the country. The need to reduce social isolation became even more significant in 2020 due to the COVID pandemic. PHA Canada launched new support programs to respond to the fear, anxiety, and intense isolation brought on by the pandemic. These programs embraced technology and ushered in a new era of virtual programming for PHA Canada. PHA Canada is also using technology and social media to build awareness of pulmonary hypertension and the realities faced by those affected by PH. Leveraging our robust online presence, PHA Canada amplifies your voices and stories daily. Our annual awareness campaigns for World PH Day and PH Awareness Month are known to #PaintCanadaPurple while highlighting the impacts of PH on Canadians. One of the most significant impacts of PH continues to be delays in diagnosis. Research conducted by PHA Canada in 2021 indicates that it still takes more than two years for 50% of patients to be accurately diagnosed with PH in Canada. Earlier diagnosis is essential for ensuring patients receive appropriate care and treatment. PHA Canada’s Sometimes It’s PH campaign educates primary care physicians and other health care providers about PH's signs, symptoms, and risk factors and helps patients get referred to the right place for treatment and support. Hope for a Future Free of PH Since the beginning, PHA Canada’s mission has been to empower the PH community through support, education, advocacy, awareness, and research. Over the years, our commitment to research has grown substantially in response to the PH community’s calls for more significant investments in PH research. In 2015, thanks to an initial donation made by the Paroian family, PHA Canada initiated a research scholarship program to support trainees in Canada to pursue pulmonary hypertension research. In 2016, in honour of the Paroian Family’s dedication to PH research, PHA Canada awarded the first two Paroian Family PH Research Scholarships to young researchers in Ontario and Quebec. Community fundraising efforts escalated, and since then, two additional scholarships have been created: the Mohammed Family PH Research Scholarship and the Loretta Chu Memorial PH Research Scholarship. As of the end of 2022, PHA Canada is proud to have awarded $150,000 in scholarships to thirteen promising PH research trainees in Canada. In 2022, PHA Canada also launched a multi-year initiative to increase PH research capacity in Canada. Patients are becoming increasingly important partners not only in conducting research (since research can’t occur without patient participation) but also in deciding what research questions should be pursued, how studies should be designed, and what outcomes need to be measured. The Research Capacity Building Project will empower patients to be more active participants and decision-makers throughout the research process. It also aims to improve coordination and collaboration among PH researchers and increase access to critical new patient data sources by creating a Canadian PH biobank. Do you want to be part of PHA Canada’s vision of a better future for Canadians affected by PH? Donate today and be part of history in the making!