STORIES

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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