Many Canadians living with rare diseases struggle for years to receive a diagnosis or access care, according to results of a new national survey conducted by market research firm Ipsos Canada.
to receive a diagnosis or access care, according to results of a new national survey conducted by market research firm Ipsos Canada.
"Canadians with rare diseases and their families have waited far too long and with severe consequences that, in many cases, could be prevented."According to the survey, patients and caregivers felt that their health-care professionals lacked knowledge of rare diseases, which delayed diagnosis and access to specialist care.
Fewer than 58 per cent of respondents said they feel they have adequate access to all of the information they need, and only 43 per cent said they were assigned a contact person they could rely on for additional information. Four out of five, or 80 per cent, said they prefer the development of rare disease centres, while 20 per cent said they prefer a new national list of drugs. Among those who voted for a new national list of rare disease drugs, most said they hoped it would provide better drug coverage with lower costs, and that drugs would be more accessible to all Canadians, regardless of their location.
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