Rare Diseases
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Doctor-turned-patient joins fight to reopen Glenrose Rehabilitation Hospital poolOnce treating patients himself, four years ago Dr. Rob Agostinis's life was turned upside down after a rare neurological condition left him paralyzed within days.HealthApr 9
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She faced major hurdles in her rare disease fight. These barriers can cost lives, experts sayWhen Madi Vanstone was 11, she found a medication that would be life changing for her battle against cystic fibrosis, but it came with a catch.HealthFeb 15, 2025
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New Brunswick gets federal funding to cover cost of drugs for four rare diseasesNew Brunswick has signed a $32-million agreement with the federal government to improve access to selected drugs for rare diseases.HealthJan 15, 2025
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Ottawa signs $40M deal with Saskatchewan to offer drug coverage for rare diseasesThe Saskatchewan and federal governments have announced an agreement for coverage of select new drugs for rare diseases.CanadaJan 10, 2025
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Alberta’s health minister signs onto federal deal for rare disease medicationsAlberta is the third province behind B.C. and Newfoundland and Labrador to sign onto a federal deal under the National Strategy for Drugs for Rare Diseases.HealthDec 5, 2024
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Alberta family dealing with rare disease while still reeling from dad’s murderNearly four years after their father and uncle were killed in shooting, an Alberta family is now struggling with a rare disease diagnosis.HealthFeb 16, 2024
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Feds to spend $1.5B over three years to improve access to drugs for rare diseasesHealth Minister Jean-Yves Duclos says up to $1.4B of that money will be used to help provinces and territories expand coverage of new and existing drugs that treat rare diseases.HealthMar 22, 2023
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Advocates frustrated a year after Saskatchewan’s pledge to explore rare disease strategyThe mother of a Saskatoon boy who had to go to the USA for life-saving treatment fears her efforts to improve rare disease treatment at home will go unheard.CanadaJan 24, 2023
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Quebec mother being denied full coverage of ultra-specialized brain surgeryA mother of two in Quebec has filed papers requesting that the province's health insurance cover the costs of an endoscopic brain surgery abroad but was denied full coverage.HealthNov 17, 2022
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Montreal mother desperate to access treatment for rare brain tumour: ‘It’s ruining my life’Celyn Harding-Jones, who has been living with a brain tumour for decades, says there is a risk the cyst could cause sudden death and she wants it removed.CanadaMay 6, 2022
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