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:
The Canadian Organization for Rare Disorders Hereby Gives Notice of its Annual General Meeting: August 26, 2024 at 2:00 PM (EDT) via videoconference
CORD Annual General MeetingAugust 26, 2024 at 2:00 PM (EDT) via videoconference Dear CORD Members: The Canadian Organization for Rare Disorders gives notice of it's Annual General Meeting on August 26, 2024 at 2pm - 3pm (Eastern Time). All individual, affiliate and corporate members in good standing are invited participate. An eligible voter must be a representative of a voting member of CORD. Eligible voters may either vote at the upcoming Annual General Meeting videoconference or by proxy. Votes by proxy must be in must be returned to us by August 25, 2024. Ballots received after this date and time, duplicate votes and spoiled ballots will not be counted. To participate in the AGM teleconference, please register by August 25, 2024 Registration: https://bit.ly/4aM8IJL Once we have received your response, we will email you the teleconference details and any other necessary documents that will be required for the meeting. Thank you for your participation and if you have any questions, please let me know. Sincerely, Christine White CORD Secretary PROXY-2024Download
The Canadian Organization for Rare Disorders Hereby Gives Notice of its Annual General Meeting: August 26, 2024 at 2:00 PM (EDT) via videoconference
CORD Annual General MeetingAugust 26, 2024 at 2:00 PM (EDT) via videoconference Dear CORD Members: The Canadian Organization for Rare Disorders gives notice of it's Annual General Meeting on August 26, 2024 at 2pm - 3pm (Eastern Time). All individual, affiliate and corporate members in good standing are invited participate. An eligible voter must be a representative of a voting member of CORD. Eligible voters may either vote at the upcoming Annual General Meeting videoconference or by proxy. Votes by proxy must be in must be returned to us by August 25, 2024. Ballots received after this date and time, duplicate votes and spoiled ballots will not be counted. To participate in the AGM teleconference, please register by August 25, 2024 Registration: https://bit.ly/4aM8IJL Once we have received your response, we will email you the teleconference details and any other necessary documents that will be required for the meeting. Thank you for your participation and if you have any questions, please let me know. Sincerely, Christine White CORD Secretary PROXY-2024Download
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