BEGIN:VCALENDAR PRODID:-AUCD VERSION:1.0 BEGIN:VEVENT DCREATED:20240328T120646 LAST-MODIFIED:20240328T120646 DTSTART:20131116T170000Z DTEND:20131116T220000Z SUMMARY;ENCODING=QUOTED-PRINTABLE:Regional Genetic Services Collaboratives/LEND Joint Meeting LOCATION;ENCODING=QUOTED-PRINTABLE:Washington, DC DESCRIPTION;ENCODING=QUOTED-PRINTABLE:=0D=0A=0D=0A =0D=0A=0D=0ASharing Resources, Building Partnerships=0D=0A=0D=0AAUCD and the National Coordinating Center for the Regional Genetic Service Collaboratives (part of ACMG) are co-sponsoring this networking event to bring together representatives of Leadership Education in Neurodevelopmental Disabilities (LEND) programs with members of the Regional Genetic Service Collaboratives (RC) to share information and plan future activities.=0D=0A=0D=0AAlthough this meeting will include brief panel presentations, the majority of the afternoon will be devoted to regional discussions around opportunities for collaboration. A map of the RC and LEND programs can be found in the top right corner of this page.=0D=0A=0D=0AAGENDA - See attached agenda in the top right corner of this page=0D=0A=0D=0AAUCD & Leadership Education in Neurodevelopmental and Related Disabilities (LEND) About LEND: www.aucd.org/template/page.cfm?id=473LEND Directory with links to individual LEND websites by state: www.aucd.org/LEND LEND Genetics Resources Page: www.aucd.org/LEND/GeneticsAUCD/NCC Webinar: Partnerships in Practice: A Look at Successful Models of Partnership Between Regional Collaboratives and LEND Programs =0D=0A=0D=0ANational Coordinating Center (NCC)Regional Genetic Collaboratives by State: Map2012 NCC Presentation to the LEND Genetics Workgroup: Building Strategic Partnerships: The Priorities and Activities of the Regional CollaborativesNew Website for NCC: www.nccrcg.org =0D=0A=0D=0A=0D=0ALinks to Relevant Resources=0D=0A=0D=0AThe Genetic Alliance and the American Academy of Pediatrics have agreed to join our RC/LEND Joint meeting to share relevant resources and to proivide examples of how materials are being used by both networks. To help familarize you with the many resources that are available, our colleagues have shared the following documents and links.=0D=0A=0D=0AGenetic Alliance:Advocacy ATLAS: Accessible Tools for Leadership and Advocacy Success: www.geneticalliance.org/advocacy-atlasGenesinLife.org: www.genesinlife.org"Does It Run in the Family?" Toolkit (Also available in Spanish) A Guide to Family Health History: http://geneticalliance.org/sites/default/files/ksc_assets/tools/book1ga_ll022309.pdf A Guide for Understanding Genetics and Health: http://geneticalliance.org/sites/default/files/ksc_assets/tools/GuideGeneticsHealth.pdf Baby's First Test: www.babysfirsttest.orgDisease InfoSearch: www.diseaseinfosearch.orgChildren and Youth with Special Healthcare Needs in Healthy People 2020: A Consumer Perspective: http://www.geneticalliance.org/sites/default/files/ksc_assets/pdfs/HP2020ConsumerPerspective.pdf =0D=0A=0D=0AAmerican Academy of Pediatrics (AAP):Genetics in Primary Care Website: www.geneticsinprimarycare.orgMedical Home Information: www.medicalhomeinfo.org Links to specific resources of interest: AAP ResourcesNewborn Screening Initiatives: CDC funded Program to Enhance the Health and Development of Infants and Children (PEHDIC) =0D=0A=0D=0AQuestions? Contact Meaghan McHugh at AUCD or Alisha Keehn at NCC.=0D=0A=0D=0A =0D=0A=0D=0A =0D=0A=0D=0AThis joint meeting was made possible, in part, with support from the MCH Genetic Services, Maternal and Child Health Bureau (MCHB), the Health Resources and Services Administration (HRSA=0D=0A=0D=0A =0D=0A=0D=0A =0D=0A PRIORITY:3 URL:http://www.aucd.org/template/event.cfm?event_id=4196&id=965 END:VEVENT END:VCALENDAR