Batten Disease
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‘This is our child’s life’: B.C. family gets small extension for crucial drug fundingA temporary reprieve for a Vancouver Island family after their terminally-ill daughter will continue to have access to life-changing medication for two more months.HealthMar 26
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B.C. ending rare drug coverage means girl will ‘suffer horrifically,’ family saysCharleigh Pollock, 9, is being treated for a terminal neurological disorder known as Batten disease with twice-monthly infusions of a drug that costs about $1 million per year.HealthFeb 11
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3 Alberta siblings with rare, terminal disorder finally have hope for a treatmentA family from Alberta with three children who have been diagnosed with the rare and fatal Batten disease has been given a new kind of hope due to an older medication.HealthAug 10, 2023
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‘1 in 8 billion’: How a devastating genetic anomaly hit 3 Alberta siblingsThree Alberta siblings have the same extremely rare genetic ailment called Batten Disease. It's a situation experts say is nearly impossible because the kids have different moms.HealthJun 23, 2021
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Coronavirus: Young Canadians with rare diseases feeling impact of pandemic"Why can't we take the same kind of initiative that we've had to COVID to helping our children with rare diseases?" asked CORD CEO Durhane Wong-Rieger.HealthMar 16, 2021
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‘A deck of cards no one should be dealt’: Ontario siblings fight rare disease, hope for cure"I'll never forget it. (On) January 15th, we go down for our usual meet-and-greet and discussions at SickKids and they give us the devastating news."HealthNov 1, 2019
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‘He’s the only child living with CLN2 in Saskatchewan’: community rallies for 4-year-old with rare diseaseThe community is rallying behind a four-year-old Regina boy who has been diagnosed with a rare disease, hoping to one day help fund a cure.HealthAug 28, 2019
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Province to cover costs of life-saving treatment for Vancouver Island 3-year-oldCharleigh Pollack has been in desperate need of the $1 million-per-year therapy to treat a rare disease.HealthJun 14, 2019
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Province working on approving life-saving medication for Vancouver Island 3-year-oldA desperate Vancouver Island family is asking the province to approve a drug that could save their daughter's life.HealthJun 14, 2019
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Prince Harry makes surprise visit to chronically ill 6-year-old with Batten DiseaseA six-year-old boy fighting Batten Disease was reunited with Prince Harry during a surprise visit from the Royal earlier this week.EntertainmentMay 5, 2017
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