About 1 in 12 Canadians, two-thirds of them children, are affected by a rare disorder. But because each disease affects only a small number of individuals, understanding and expertise may be limited and fragmented across the country. Canada’s Rare Disease Strategy proposes a five-point action plan that will address unnecessary delays in testing, wrong diagnoses and missed opportunities to treat.
1. Improving early detection and prevention,
2. Providing timely, equitable and evidence-informed care,
3. Enhancing community support,
4. Providing sustainable access to promising therapies and
5. Promoting innovative research
Canadian Association of Paediatric Health Presents Teens with Rare Diseases: Helping Them Transition to Adulthood Webinar: Teens with Rare Diseases: Helping Them Transition to Adulthood When: Wed, 10 August, 11:00 – 12:30
Webinar: Teens with Rare Diseases: Helping Them Transition to Adulthood When: Wed, 10 August, 11:00 – 12:30 Description Living with a rare condition is challenging, and living well with a chronic condition is a continuous challenge. Life as a teen with a chronic rare condition transitioning to adulthood is a challenging journey that no child should take alone. Which is exactly why the innovative Comprehensive Transition Program in Hemoglobinopathies at the Hospital for Sick Kids was developed. A pilot project that has been in place for two years, it provides an innovative model of care based on other transition programs but also designed for the unique needs of young people with rare blood disorders. This webinar starts with a discussion of the rationale and framework for Canada's Rare Disease Strategy presented by the president of the Canadian Organization for Rare Disorders. It is paired with a report on the first two years of the pilot Transition Hemoglobinopathies Program presented by Sick Kids UHN Transition Navigator. Speakers: Durhane Wong-RIeger, Canadian Organization for Rare Disorders and Brooke Allemang, Transition Navigator, Sickle Cell & Thalassemia Programs, HSK Register Here