Regional Genetic Services Collaboratives/LEND Joint Meeting
Download |
RC LEND Mtg Agenda 11 6 13 FINAL.pdf (481KB) [download] NCC and RC Contact List with map updated 1113.pdf (192KB) [download] |
12:00pm - 5:00pm
Location: Washington, DC
Sharing Resources, Building Partnerships
AUCD 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.
Although 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.
AGENDA - See attached agenda in the top right corner of this page
AUCD & Leadership Education in Neurodevelopmental and Related Disabilities (LEND)
- About LEND: www.aucd.org/template/page.cfm?id=473
- LEND Directory with links to individual LEND websites by state: www.aucd.org/LEND
- LEND Genetics Resources Page: www.aucd.org/LEND/Genetics
- AUCD/NCC Webinar: Partnerships in Practice: A Look at Successful Models of Partnership Between Regional Collaboratives and LEND Programs
National Coordinating Center (NCC)
- Regional Genetic Collaboratives by State: Map
- 2012 NCC Presentation to the LEND Genetics Workgroup: Building Strategic Partnerships: The Priorities and Activities of the Regional Collaboratives
- New Website for NCC: www.nccrcg.org
Links to Relevant Resources
The 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.
Genetic Alliance:
- Advocacy ATLAS: Accessible Tools for Leadership and Advocacy Success: www.geneticalliance.org/advocacy-atlas
- GenesinLife.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.org
- Disease InfoSearch: www.diseaseinfosearch.org
- Children 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
American Academy of Pediatrics (AAP):
- Genetics in Primary Care Website: www.geneticsinprimarycare.org
- Medical Home Information: www.medicalhomeinfo.org
- Links to specific resources of interest: AAP Resources
- Newborn Screening Initiatives: CDC funded Program to Enhance the Health and Development of Infants and Children (PEHDIC)
Questions? Contact Meaghan McHugh at AUCD or Alisha Keehn at NCC.
This 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