RAISE AWARENESS
Rare Disease Day
Rare is many. Rare is strong. Rare is proud.
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Rare Disease Day takes place on the last day of February each year to raise awareness for rare diseases and their impact on the lives of patients and families.
Led by EURODIS, the international Rare Disease Day Campaign both educates the general public and seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals, and other with an interest in rare diseases.
Over 6000 rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient-to-patient suffering from the same disease. Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatment. Quintessentially disabling, the patient’s quality of life is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.
The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families.
The Canadian Organization for Rare Disorders (CORD) is Canada’s national network for organizations representing those with rare disorders. CORD, and its member organizations such as PHA Canada, have led the effort to develop a Canadian Rare Disease Drug Strategy.
2025 PHA Canada Activities
In 2025, PHA Canada marked Rare Disease Day by inviting our community to raise their voices and share their stories. We encouraged patients, caregivers, and supporters to post about their experiences living with or affected by pulmonary arterial hypertension (PAH), helping to raise awareness and advocate for better access to treatments.
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We also invited our community to take part in a special webinar hosted by CORD (Canadian Organization for Rare Disorders), where we explored groundbreaking initiatives, innovative care models, and what’s next in ensuring that Canada’s National Rare Disease Drug Strategy delivers meaningful, timely support for Canadians who need it most.
2024 PHA Canada Activities
In 2024, PHA Canada joined the rare disease community in Ottawa to mark Rare Disease Day and the first anniversary of Canada’s National Rare Disease Drug Strategy. We participated in the Flag Raising Ceremony at Ottawa City Hall and took part in the March to Parliament Hill alongside CORD and other advocates, raising awareness and advocating for improved support and access to treatment for those living with rare diseases.
2023 PHA Canada Activities
PHA Canada joined others in the Rare Disease community at the Rare Disease Day events in Toronto and Ottawa, calling for a Rare Disease Strategy in Ontario and Canada.
PHA Canada Ambassador Jennifer Bryson meeting with the Honourable Lawrence MacAulay at the 2023 Rare Disease Action Day on Parliament Hill. Jennifer and other rare disease advocates met with elected and non-elected federal officials to encourage quick implementation of the national strategy for rare disease drugs and the creation of centres of expertise for better diagnosis and care.
PHA Canada Board Director Joan Paulin and PAH patient Brooke Paulin at CORD’s Rare Disease Day breakfast reception at Queen's Park. Patients, families, and advocates met with Members of Ontario’s legislature and other key decision-makers.