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.
How to participate
Join or host an event
Click here to see the Events listed on the Rare Disease Day website
Join PHA Canada in Toronto at the CORD Breakfast Reception
The Canadian Organization for Rare Disorders is hosting Breakfast Reception at Queen’s Park in celebration of International Rare Disease Day. Located in downtown Toronto, this is an opportunity for patients, families and advocates to meet with Members of Provincial Parliament and other supporters. This event starts at 8:00 am.
Where: Legislative Assembly of Ontario (Queen’s Park)111 Wellesley Street West, Legislative Dining Room, Toronto, Ontario
When: February 28, 2023 8:00 am to 9:30 am
PH Patients and caregivers in the Toronto area are invited to join PHA Canada’s group. If you are interested in attending, please click here to register.
Once you have registered, please contact Darren Fisher at firstname.lastname@example.org so we can include you in our group.
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Learn more about PH
If you or a loved one has been touched with pulmonary hypertension, you know that lack of awareness is one of our greatest challenges.
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