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.
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.
Development of a Strategy for Rare Diseases
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 Strategy.
Click here to read "Now is the Time: A Strategy for Rare Diseases is a Strategy for all Canadians"
On March 22, 2023, the Government of Canada announced the funding of $1.5 billion over three years in support of a National Strategy for Drugs for Rare Diseases. Most of this funding, $1.4 billion, will go to the provinces through bilateral, individualized agreements. The announcement included funding for research, improved data sharing for rare diseases, and establishing a stakeholder Implementation Advisory Group that will provide advice and continued engagement as the plan is unrolled. What this means for Canadians living with pulmonary hypertension needs to be clarified.
Click here to read the Health Canada press release
Click here to read the PHA Canada press release
Click here to read the Canadian Organization for Rare Disorders (CORD) press release