Living with Myasthenia gravis.
Ghassan opens up about his journey living with Myasthenia gravis.
Une vie changée pour toujours
À travers cette vidéo, Ghassan nous explique son parcours, ses hauts, ses bas et comment il a conservé espoir dans sa vie et pour le futur.
No diagnosis, no hope?
It all started when Caroline noticed that 4-month-old Tommy couldn’t hold his head up on his own. Her pediatrician thinks that it’s just a slight developmental delay, but the more Tommy grows, the more his motor difficulties multiply. He can neither sit upright nor stand to try to walk like other children. More than 12 …
In memory of Elena
In November 2019, little Elena and her family participated in our studio recording for the Not So Rare campaign. Elena and her parents were so committed to our cause that they didn’t hesitate to make the return trip between Quebec City and Montreal, more than 4 hours away, to participate in our video shoot. Almost …
Relaunch: Not So Rare Diseases Campaign
On November 12, Max’s Big Ride and his partners are relaunching Not So Rare campaign and petition. It was bad before. With the pandemic, now it’s worse. People afflicted with a rare disease have to navigate an overwhelmed health-care system. Forced to endure delays for the care they need to survive and thrive. MORE THAN …
The ordeal of children with Lyme disease
At the age of 10, Enya contracted Lyme disease. This rare disease is transmitted by a tick bite. Enya and her family went through hell before she was diagnosed and treated. On average, Lyme disease affects 2.7 per 100,000 Canadians. Most cases are in Quebec, Ontario and Nova Scotia. Diseases are considered as rare when …
A Prader Willi love story
In November 2010, Carole Elkhal and her husband Marco Del Cane waited anxiously at the Montreal Children’s Hospital. Something was wrong with their three-month-old daughter Giulianna. She could not feed and lacked muscle strength. But what was it? They feared the worst. After 26 days in hospital with their daughter, they were sent home without …
Fighting for Patients with PNH
Barry Katsof was a high-profile Montreal businessman, who ran a globally recognized company for 34 years. One morning in early 2000, he awoke to find blood in his urine. His doctors sent him for a large battery of tests, but they found nothing. Barry knew something was still wrong, so he persisted through two additional …
Rare diseases and the fluid of life
Helping people with rare blood diseases The Aplastic Anemia and Myelodysplasia Association of Canada (AAMAC) was founded by the family of a child affected by aplastic anemia. Their primary goal was to advocate for a national bone marrow donor registry. When this effort was successful, the organisation didn’t stop there! Aplastic Anemia and Myelosdysplasia are …
Caring for People with Rare Diseases
In the early 2000s, Gail Ouellette was touched by the story of a family whose little girl suffered from a very rare bone disease. As a genetic counselor, her role was to educate people about diseases. In the case of this little girl, who had a disease with a complicated name, her research found very …