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STORIES

Audrey and George Munger founder of Enfance Lyme Québec, with their daughter Enya who suffer for Lyme.

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 they affect 1 in 2,000 people. Three years later, Enya still suffers from the effects of this rare disease. To prevent similar suffering in other

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Carole Elkhal, Community Director at Prader Willi Foundation, with family, daughter Guillianna at the left has Prader-Willi.

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 an answer. They pushed ahead. Finally, on January 31, 2011, a geneticist gave them a diagnosis without hope. Giulianna had Prader-Willi syndrome (PWS), a rare

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Barry Katsof, founder Canadian Association of PNH Patients.

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 rounds of testing. Two years later, he received a diagnosis for a rare disease: paroxysmal nocturnal haemoglobinuria (PNH). PNH is a very rare and debilitating

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Discover rare diseases of the blood and Aplastic Anemia and Myelodysplasia Association of Canada (AAMAC), helping patient across Canada.

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 rare diseases, which are any diseases and conditions that affect fewer than 1 person in every 2,000. Today, the AAMAC stretches across Canada and provides

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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 little information to give the family. Throughout her years of practice, she learned that most people with a rare disease are alone in their struggle

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Hope For Children With Duchenne

In 2013, the Sedmihradsky family’s world came crashing down. Their son Max, 2 years old, was diagnosed with Duchenne muscular dystrophy (DMD). The news was devastating, beyond words, for Andrew and Kerri, Max’s parents. DMD is a rare disease, affecting mostly boys (1 in 3,500) and sometimes girls. There is no cure, and this degenerative muscle disease generally leads to a premature death, when young adults with DMD reach their 20’s or 30s. DMD is basically watching your child losing

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