Care & Treatment of Children with Rare Disorders in Pediatric Health Centre’s

CAPHC is seeking information related to the care and treatment of children with rare disorders in pediatric health centre's. 

Approximately 1 in 12 Canadians suffer from 1 of over 7,000 different rare diseases. Fifty percent of the people affected by rare diseases are children, and 30% of children with rare disease will not live to see their fifth birthday. Despite a public health system that is the envy of most, Canada has lagged far behind all other developed countries in recognizing and supporting rare diseases. Patients with rare diseases face significant challenges, including delays in diagnosis, the severe impact of the disease on their autonomy and quality of life, and difficulties in obtaining appropriate care and access to treatments.

As Pediatric Health Care Leaders & healthcare professionals faced with caring for these patients, we would like to ask you to share your feedback on the questions below.

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