Teens with Rare Diseases: Helping Them Transition to Adulthood

Last modified by Ann Watkins on 2016/09/16 17:19

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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. 

Presentation Slides

Brooke Allemang's Presentation Slides

Other Resources

Learn more about CAPHC's Guidelines for Transitioning from Paediatric to Adult Care

Learn more about the Canadian Organization for Rare Disorders

FullSizeRender.jpgDURHANE WONG-RIEGER, PHD is President & CEO of the Canadian Organization for Rare Disorders, chair of the Consumer Advocare Network, and President & CEO of the Institute for Optimizing Health Outcomes. Internationally, Durhane is Past-Chair of the International Alliance of Patient Organizations, Board Member of Rare Disease International, Member of Health Technology Assessment International Patient /Citizen Involvement Interest Group and Board Member representing patient interests at DIA International Association. She is a certified Health Coach and licensed T-Trainer with the Stanford-based Living A Healthy Life with Chronic Conditions.
Dr. Wong-Rieger has served on numerous health policy advisory committees and panels and is a member of the Patient Liaison Forum for the Canadian Agency for Drugs and Technologies in Health. Durhane has a PhD in psychology from McGill University and was professor at the University of Windsor, Canada from 1984-1999. She is married and has two children. She is a trainer and frequent lecturer and author of three books and many articles.

BAHeadshot.jpgBrooke Allemang is a social worker specializing in adolescent health and mental health. She completed a Bachelor of Health Sciences at Western University in 2011 and a Masters of Social Work at the University of Toronto in 2014. She has worked clinically with adolescents and young adults with a variety of mental health issues and chronic health conditions, focusing specifically on the transition from pediatric to adult health are. Brooke has a wealth of experience in program development, quality improvement and evaluation. She is currently working in an innovative role as a Transition Navigator in the red blood cell disorders clinics at SickKids and Toronto General Hospital. Brooke has been invited to speak about the red blood cell disorders transition program at international conferences including the National Institutes of Health Sickle Cell Disease Forum.

Created by Ann Watkins on 2016/07/12 17:51