National survey of patients and their caregivers indicates both feel vulnerable and unsupported
Toronto, Ontario, Apr. 3, 2019 – According to survey results released today, two-thirds of Canadians caring for loved ones living with a rare disease feel unsupported by Canada’s healthcare system. The vast majority (87 per cent) have had their family finances negatively impacted as a result of their responsibilities, and three out of four are socially isolated. These results are particularly timely given the celebration of National Family Caregiver Day this week.
“As Canadians, we must do better. National Family Caregiver Day offers an opportunity not only to honour this vital group but also to commit to addressing these issues that impact their physical, mental, emotional and financial well-being. We owe it to them; we owe it to us,” says Durhane Wong-Rieger, president, Canadian Organization for Rare Disorders (CORD).
“Nowhere are family caregivers more critical than in the rare disease community. Two-thirds of rare diseases affect children; it often takes years to get a diagnosis; and there are few specialists, no standards of care, and almost no effective treatments. Family caregivers provide the bulk of care and support. Our national healthcare system would collapse without their volunteer commitment, and our neglect of their needs is not only unethical but counterproductive,” says Wong-Rieger.
Other key findings of the survey include the following:
RARE DISEASE DAY 2024 CANADIAN ILLUMINATIONS
On February 29, 2024 these monuments will be lit up in honor of Rare Disease Day. #LightUpForRare Amherst Town Hall in Amherst Nova ScotiaBrampton Clock TowerBritish Columbia LegislatureBritish Columbia PlaceCalgary TowerEdmonton High Level BridgeEdmonton TowerFred A. Lundy bridge in Newmarket, ONMississauga City HallNanaimo BastionNiagara Falls (10:00pm – 10:15pm.) [Live cam link: https://www.earthcam.com/canada/niagarafalls/?cam=niagarafalls_str]Niagara sign in Thorold/Niagara regionOakville Town HallOlympic Cauldron Vancouver Convention CentrePeterborough City HallSales Of Light VancouverScience World Vancouver (FEB 28th)Signal Hill in St. John’s, NLThe Hamilton SignToronto CN TowerToronto Sign in Nathan Phillips SquareVaughan City HallVancouver Convention CentreThe Peace Bridge between Canada and the US Winnipeg Sign Winnipeg Bridge Let us know if there are other Canadian illuminations to add. Tag us on social media @raredisorders (Twitter/X), @raredisorders_cord (Instagram) or email us at info@raredisorders.ca with your photos of the monuments and Rare Disease Day events.
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