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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 would ease the pediatric to adult care transition? This webcast will bring health care providers, medical experts and patient advocates together to share ideas and solutions to bridge the gap between pediatric to adult care for those living with neurodevelopmental disorders.
Dr. Carolina Gorodetsky Pediatric Neurologist,
The Hospital for Sick Children
Annie Thomas-Diceman
Clinical Social Worker,
St. Michael's Hospital
Carl Weatherell
Director and Chair of the Board,
Dravet Canada
Durhane Wong-Rieger
President and CEO,
Canadian Organization for Rare Disorders
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Moderator: André Picard
Health Reporter and Columnist,
The Globe and Mail
Acadia is advancing breakthroughs in neuroscience to elevate life. Since our founding we have been working at the forefront of healthcare to bring vital solutions to people who need them most. We developed and commercialized the first and only FDA-approved drug to treat hallucinations and delusions associated with Parkinson’s disease psychosis and the first and only approved drug in the United States and Canada for the treatment of Rett syndrome (learn about Rett syndrome at RettLife.ca). Our clinical-stage development efforts are focused on Prader-Willi syndrome, Alzheimer’s disease psychosis and multiple other programs targeting neuropsychiatric symptoms in central nervous system disorders. For more information, visit us at ca.acadia.com and follow us on LinkedIn and X.
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Dr. Gorodetsky completed a general pediatric residency at the Technion in Haifa, Israel. In 2017, she moved to Canada to complete a three-year training as a core pediatric neurology fellow at SickKids Hospital, Toronto. She then undertook a combined fellowship in pediatric and adult movement disorders and neuromodulation at SickKids and Toronto Western Hospitals. Over this time, she has been pursuing novel research in the field of wearable technology and artificial intelligence in pediatric movement disorders. She is completed an MSc through the Institute of Medical Science at the University of Toronto.
Dr. Gorodetsky joined the neurology division in SickKids Hospital, Toronto, Canada in 2021 to work in the movement disorders discipline and neuromodulation in the pediatric population. She continues the multi-disciplinary collaborative work in establishing the first Canadian pediatric Deep brain stimulation clinic in SickKids hospital. She is currently the medical director and the program director of the movement disorder and Deep brain stimulation programs in SickKids.
André Picard is a health reporter and columnist for The Globe and Mail, where he has been a staff writer since 1987. He is also the author of six bestselling books.
André is a two-time winner of the Columns category at Canada's National Newspaper Awards, and past winner of prestigious Michener Award for meritorious public service journalism.
He was named Canada’s first Public Health Hero by the Canadian Public Health Association, and a Champion of Mental Health by the Canadian Alliance on Mental Illness and Mental Health. He received the Queen Elizabeth II Diamond Jubilee Medal for his dedication to improving healthcare.
André is a graduate of the University of Ottawa and Carleton University, and has received honorary doctorates from eight universities, including UBC and the University of Toronto.
Dr. Durhane Wong-Rieger is President and CEO of the Canadian Organization for Rare Disorders. She is Co-Chair of the Implementation Advisory Group of Canada’s National Strategy on Drugs for Rare Diseases. Internationally, she is President of the Asia Pacific Alliance of Rare Disease Organisations, treasurer of the United Nations Nongovernmental Committee for Rare Diseases, member of the International Research Consortium on Rare Diseases and member of the RDI-Lancet Commission on Rare Diseases. Beyond rare, she serves as board member of From Targeted Testing to Treatments (FT3). She has a PhD in Psychology from McGill University and past professor at University of Windsor. Dr. Wong-Rieger is a certified health coach, frequent lecturer and trainer. She has authored three books and multiple articles.
Over his 35-year career, Carl has held executive positions (CEO, President, Co-Founder, Chief Project Officer) across various sectors, including for-profit organizations, non-profits, and academia. He also founded a management consulting firm focused on non-profits and is co-founding a new venture capital fund.​
In these roles, he has successfully guided organizations and teams through transformation by challenging the impossible, fostering insightful discussions, developing strategic initiatives, and promoting a strong sense of ownership and passion. ​
Carl serves as a Director on two for-profit Boards of Directors and is the Chair of the external advisory board for one of the National Research Council's research centres. ​
He has worked with organizations in Canada, the United States, Europe, Australia, South America, and Saudi Arabia. ​
His daughter Alyssa is 22 and was diagnosed with Dravet in 2004.​