The National Coordinating Center of the Regional Collaboratives has developed several work groups. For a list of the NCC work group and their activities go to: ncc_workgroup_relationships1.doc

On October 8, 2008, President Bush signed the Prenatally and Postnatally Disgnosed Conditions Awareness Act into law. This act authorizes the Department of Health and Human Services to establish a grant program to collect and disseminate information regarding Down syndrome or other prenatally or postnatally diagnosed diseases and to coordinate the provision of support services for those who receive a diagnosis of one of those diseases. To view the full text of the act, go to:http://www.govtrack.us/congress/billtext.xpd?bill=s110-1810

The Washington State Department of Health program recently released a series of new translated materials produced through grant funding from the Western States Genetic Services Collaborative. These materials include:

I. Orientación Sobre El Cuidado Médico Administrado Finding Your Way in Managed Care: A Guide for Washington Families of Children with Special Health Care Needs, 2000, revised May 2008, Spanish Version http://www.doh.wa.gov/cfh/mch/CSHCN_publications.htm

II. What’s the Plan?
Available in Spanish, Chinese, Vietnamese, Russian, and Korean. This one page worksheet is designed to help you organize your questions and concerns to plan for doctor visits. It also includes space for writing down “next steps”. http://www.cshcn.org/resources/CarePlans-Download.cfm

III. Transition Timelines:
Transition Timelines for Children and Adolescents with Special Needs: Developmental Disabilities/Delays. Now available in Korean.

Transition Timeline for Children and Adolescents with Special Needs: Chronic Illnesses/Physical Disabilities. Now available in Korean. http://depts.washington.edu/healthtr/Timeline/timeline_instr.htm

IV. Health History Summary for Teens.
Available in Korean, Chinese, Spanish, Russian, and Vietnamese http://depts.washington.edu/healthtr/healthhistory/default.html

V. WA State Medical Home Brochure for Families – Does Your Child Have a Medical Home?
Available in Korean, Chinese, Spanish, Russian, and Vietnamese http://www.medicalhome.org/resources/other_lang.cfm

To view a list of all of Washington State’s translated resources by language visit the University of Washington, Medical Home Leadership Network Website http://www.medicalhome.org/resources/other_lang.cfm

The comprehensive resource from the Coalition for Genetic Fairness explains the issue of genetic discrimination and what GINA means for all individuals and families, as well as employers, insurers, healthcare providers, and researchers. To access the printer-friendly version of the GINA resource, go to: http://tinyurl.com/3pu9dp

The KASA (Kids As Self Advocates of Family Voices), the Region 1 Parent Technical Assistance Training Center & Family Voices-NJ/F2FHIC-NJ @ the Statewide Parent Advocacy Network of New Jersey, and the LRE Part B community of TAcommunities are sponsoring a teleseminar on The Role of Youth With and Without Disabilities in Making High School More Inclusive. The seminar is being held on October 15th at 3:30pm Eastern time. For more information, go to: http://www.surveymonkey.com/s.aspx?sm=fTaJFRd5gdwv8PnZ9IJh_2bg_3d_3d

The CDC recently published a Morbidity and Mortality Weekly Report examining the impact of expanded newborn screening. The CDC used 200-2006 data from those states with well-established MS/MS screening programs to estimate the number of children in the United States who would have been identified with disorders in 2006 if all 50 states and the District of Columbia had been using the ACMG panel. To view this article, go to: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5737a2.htm

On Capitol Hill today, the Yukon-Kuskokwim Health Corporation’s telemedicine program in Alaska was held up as an example of what high speed internet access can offer rural America. For more information, go to: http://aprn.org/2008/09/16/bethel-based-telemedicine-program-held-up-as-a-model-in-dc/

The National Coordinating Center for the Regional Collaboratives released their June 2008 issue of the NCC Collaborator. This issue focuses on data and data collection methods within the different regions. To view the newsletter, go to: http://www.nccrcg.org/newsletter/NCC_Collaborator_06-09-08.pdf

The National Human Genome Research Institute has created new webpages about genetics and genomics for health professionals. These pages provide genetics information about patient management, curricular resources, new NIH and NHGRI research activities, and ethical, legal, and social issues. To view these pages, go to: http://www.genome.gov/27527599

Scripps Genomic Medicine and the J. Craig Venter Institute are sponsoring a one and a half day conference on the progresses and challenges of genomics. The conference will be held on February 27028 at the Scripps Research Institute in La Jolla, California. For more information, see the the-future-of-genomic-medicine-ii.pdf conference brochure.