Transition Work Group November, 2010

History Informal Meeting at 2007 ACMG meeting Affiliation with NCC Independent work group communicating with NCC

Membership Open and Varies from month to month No bylaws No restrictions All are welcome 12 callers in October from 5 regions Dr. Waisbren and her staff administer

Activities Monthly Call Region 7 and Region 2 Website (off to a good start but has been minimally active recently

The Calls Introductions – new people each month Special announcements –E.g. PKU family event in Chicago –Univ of Fla Transitions Center update

The Calls “Around the Horn” – reports on recent activities by Region Region 1 – consortium meeting Don’t forget the primary care doc Region 2 RFA for Transition Navigator Hemoglobinopathy transition retreat Barriers, navigator

Around the Horn Region 3 update from Florida Region 4 Developing a product for parents of young adults –Physicians as enablers Region 6 –Panels at annual meeting on PKU and other metabolic –RC supports Dr. Pickler in Colorado –Importance of medical home as part of transition

Benefits Sharing of ideas Possible Collaborations being investigated Mutual Support Gentle mutual reassurance Celebrate successes No Nobel Prizes but a valued and valuable activity Cheap!