RAISE AWARENESS
Rare Disease Day
Rare is many. Rare is strong. Rare is proud.
​
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
On February 28, join us in raising awareness and advocating for better care and treatment access for people living with pulmonary hypertension (PH). Your voice can make a difference!
​
How You Can Get Involved:
-
Sign the Advocacy Letter – Support our Time Matters campaign by signing the advocacy letter on our website. Your signature helps push for public funding of a life-changing treatment for PAH.
-
Share the Letter – Ask your friends and family to sign too! Challenge yourself to get six others to join the movement and amplify our message.
-
Share Your Story – Help others understand what it’s like to live with PH. Post a video or write about your journey on social media, tag PHA Canada, and use #RareDiseaseDay #PHAwareness.
-
Connect & Share – Follow PHA Canada on social media and share our Rare Disease Day posts to spread awareness with your network. Every share helps reach more people.
-
Write to Your Local Representative – Let your government representatives know what it’s like to have a rare disease and why funding for new treatments is urgently needed. Your story matters.
Together, we can make an impact. Get involved this Rare Disease Day and help drive change for the PH community!
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.