Rare Diseases
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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
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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
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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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Alberta brothers team up to help sister battling rare genetic diseaseA pair of Alberta brothers is rallying around their younger sister battling a rare genetic disease.HealthFeb 13, 2022
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Saskatoon family to be reimbursed for out-of-country medical feesThe provincial government is reimbursing most of the cost of life-saving brain disease treatment received by Kirsten Finn's now-five-year-old son, Conner, in 2020.CanadaNov 22, 2021
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Saskatchewan family renews calls for reimbursement of $832K out-of-country medical billThe health minister said Monday he's willing to meet with the family to review their case, adding he isn't ruling out reimbursement.CanadaNov 15, 2021
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Coronavirus: Ontario patients, caregivers highlight impact of pandemic on rare disease community"These are people that fall through the cracks and fall through the cracks," said Durhane Wong-Rieger, President and CEO of Canadian Organization for Rare Disorders.CanadaFeb 26, 2021
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