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The Transition Workgoup

Transitioning to independence involves more than just transferring care. Learn how to support teens and emerging adults in developing their identity and autonomy beyond genetic conditions. Join the Transition Workgroup for resources, policy guidelines, and peer-reviewed articles to promote successful transitions. Help us complete unfinished business and advocate for mental health inclusion in genetic services.

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The Transition Workgoup

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  1. The Transition Workgoup Susan E. Waisbren, PhD Boston Children’s Hospital Harvard Medical School

  2. THE KEYS TO SUCCESS Transition is more than transfer of care. It means transitioning to greater independence and developing an identity beyond the genetic condition. Parents and healthcare providers provide a safety net, because teens and emerging adults will experiment.

  3. ACTIVITIES NEGC Transition Workgroup-Definition Transition Toolkit Moving on with Mito GEMSS contributions Transition Policy Adult Health Survey

  4. ACTIVITIES CONT. Face Forward NCC Workgroup Model Programs Homocystinuria Adult Support Group Guidelines for PKU, Galactosemia and Tyrosinemia Peer Reviewed Journal Articles

  5. UNFINISHED BUSINESS • Establish the support group for adults with metabolic disorders so that it is self-sustaining. • Ensure that mental health is included in all models for genetic services. • Develop a tele-mental health program in conjunction with Next Step

  6. MORE UNFINISHED BUSINESS • Obtain funds to support the Ask Lady Q program • Conduct Quality Improvement study on implementation of the Transition Policy • Publish study on premature aging in adults with metabolic disorders

  7. THANK YOU! John Moeschler Karen Smith Peter Antal Monica McClain Transition Work Group NEGC Collaborative Council Bill Kubicek and all of Next Step New England Consortium of Metabolic Programs

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