Meetings and Events

Learning From One Another:
A Meeting for Leaders of Disease Specific Organizations
September 12, 2011 Agenda

Mary-Frances Garber, NERGG Executive Director, with speakers: Karen Peluso, Neurofibromatosis Inc NE, Michelle Breedlove-Sells, The Dempster Family Foundation and Maureen Gallagher, Massachusetts Down Syndrome Congress

Bringing Mothers Together
Supportive Group Counseling
If you are just learning that your child has a birth defect or genetic condition and think you would benefit from professional support, and the opportunity to talk with other mothers, then this group counseling experience may be for you.
For more information please go to: http://www.listeningreflectinghealing.com

Research Studies

2011 CHARGE Syndrome Foundation Pilot Grant Program Request for Proposal:
The CHARGE Syndrome Foundation, Inc. announces the availability of pilot grants of $25,000 to $50,000. The purpose of these grants is to promote new biomedical research into the etiology, genetic and molecular mechanisms and treatment of CHARGE syndrome. For more information Click Here

“New England Genetics Workforce Project: Moving to the National Level”
Last year, the New England Genetics Collaborative conducted in-depth interviews with providers who treat patients with metabolic disorders identifiable by newborn screen in the New England region to examine the depth and scope of care provided, coordination of care, and provider perceptions about the impact of expanded newborn screening for metabolic disorders. To better understand what providers face nationally, we are asking you to complete a short on-line national survey regarding your experiences caring for children with metabolic conditions. The survey was developed with the UNH Survey Center with funding from the National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives (NCC).
https://www.unh.edu/survey-center/geneticswf.html

For questions on this survey please contact: Robert J. McGrath, PhD University of New Hampshire Department of Health Management and Policy (603) 862-5047

Autism Research Study: In an effort to better understand Autism Spectrum Disorders for earlier diagnosis and better treatment, we at Children's Hospital are collecting data on children 24 months and older with a diagnosis of ASD.

In the News

- How to Deliver the News? New Advice for Doctors Diagnosing Prenatal Down Syndrome

-Human Genome Research Institute launches improved online talking glossary of genetic terms