Event summary produced by The Globe and Mail Events team. The Globe’s editorial department was not involved.
Approximately one in 12 Canadians are affected by a rare disorder and two thirds of them are children, according to the Canadian Organization for Rare Disorders (CORD). Due to the low number of individual cases, qualified specialists are hard to find.
After years of assembling a trusted pediatric care team, parents are often faced with the challenge of finding a new adult care team once their child turns 18. The challenge is even more complex for rare neurodevelopmental disorders requiring multi-disciplinary care.
What strategies can ease the pediatric to adult care transition? On October 16 The Globe and Mail hosted a webcast to bring health care providers, medical experts and patient advocates together to share ideas and solutions.
Missed the live event or would like to view it again? Scroll down to the video below.
André Picard, health reporter and columnist with The Globe and Mail moderated the panel, hosting the following speakers:
- Dr. Carolina Gorodetsky, pediatric neurologist with The Hospital for Sick Children;
- Annie Thomas-Diceman, clinical social worker with St. Michael’s Hospital
- Carl Weatherell, director and chair of the board with Dravet Canada;
- Durhane Wong-Rieger, president and CEO of the Canadian Organization for Rare Disorders.
Panelists discussed strategies such as pre-planning for the transition, increasing the number of health care navigators in hospitals and clinics, and closing the data divide between pediatric and adult patient records.
The speakers also emphasized the importance of supporting families of patients through issues such as financial strain, social isolation and uncertainty about future care.
View the full recording below:
The Globe and Mail presented the event with sponsor support from Acadia Pharmaceuticals, a company focused on rare diseases such as Rett Syndrome. To learn more about CORD visit https://www.raredisorders.ca/ To learn more about Dravet Canada visit https://dravet.ca/ For upcoming Globe and Mail events see www.globeandmail.com/events