Brin Marks was told that she wouldn't live past age 17, but soon, she will be graduating from high school. "Seeing her walk across that stage is going to be amazing," says her mom.
Symptom progression and the effectiveness of medication are often the only ways doctors can determine if a patient has the neurodegenerative condition.
COVID has proven we can quickly set up infrastructure without long-term clinical data. It's time to do the same with rare diseases, says Durhane Wong-Rieger, president and CEO of Canadian Organization for Rare Disorders.
John Clark, who lives with polycythemia vera, a myeloproliferative neoplasm (MPN), says one of the biggest challenges for people with an MPN is access to medication. His treatment costs $60K per year.
Catherine Boivin, who lives with spinal muscular atrophy, wants all people living with the progressive muscle-weakening disease to have access to treatments and the best standard of care.
'Our spending is way out of line compared to many European and Scandinavian countries which do a much better job of supporting people staying in their own homes,' says advocate.
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We have a ways to go in how we support aging Canadians, but for many, getting older can be a great experience