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
PHA Canada joined others in the Rare Disease community at the Rare Disease Day Breakfast Reception at Ontario's Legislature. The event was hosted by the Canadian Organization for Rare Disorders, calling for a Rare Disease Strategy in Ontario and Canada.
Click here to read "Now is the Time: A Strategy for Rare Diseases is a Strategy for all Canadians"
Click here to see the "Ontario Infographic"
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.
Click here to learn more about PH.
Start a Fundraiser
Share your passion and commitment to helping Canadians affected by PH by starting your own fundraiser today.
Click here to get started!