Access to Credible Genetics Resources Network

Increasing Access to Scientifically Accurate Genetics Information
About Single Gene Disorders

Finding accurate information on rare genetic disorders can be difficult for families faced with a new diagnosis. Healthcare providers also need quality information that will help them recognize genetic disorders and give appropriate care.

The goal of the ATCG Resource Network is to provide accurate information about rare genetic disorders for families and healthcare providers. Genetic Alliance and its partners will:

• Decide what kind of information families and healthcare providers need to make informed decisions about taking care of a person who has a rare disorder.
• Develop ways to decide if information on a rare disorder is accurate.
• Create new ways to help people develop accurate information about rare disorders.

This Resource Network is funded through a grant from the Centers for Disease Control and Prevention (CDC). Genetic Alliance and partners will build this Resource Network based on two rare disorders, Duchenne/Becker muscular dystrophy (DBMD) and Fragile X syndrome (FXS). Methods developed to evaluate or create accurate information for these disorders can be used for other rare disorders.

If you would like to participate in the Access to Credible Genetics Resources Network or have questions, please contact Amelia Chappelle at achappelle@geneticalliance.org.

Genetic Alliance’s partners in the project include:

• FRAXA Research Foundation
• Gene Tests/Gene Clinics
• National Coalition for Health Professional Education in Genetics
• National Council of La Raza
• National Fragile X Foundation
• Parent Project Muscular Dystrophy
• University of Maryland School of Medicine

Three groups will provide guidance for this resource network: a National Advisory Council, DBMD Advisory Council and FXS Advisory Council. Information about the project, its process and its products will be posted here regularly.

This web page is supported by cooperative agreement #525036-02 with the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention (CDC). The content of this webpage is solely the responsibility of Genetic Alliance and does not necessarily represent the official views of CDC.