Press Releasess

Canada’s rare disease caregivers under immense stress, struggling with mental health issues, isolation and financial burden

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: 

  •  Almost 80 per cent of rare disease caregivers suffer from mental health issues as a result of their caregiving responsibilities 
  • 68 per cent reported that caring for someone with a rare disease has negatively impacted their work performance 
  • 63 per cent have taken on debt because of their caregiving responsibilities 
  • 70 per cent feel that their caregiving role has put a strain on their marriage/intimate relationships 

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CORD_2019 Canadian Impact of Rare Disease_Infographic

CORD_2019 Canadian Impact of Rare Disease_Infographic