Family Support Resources Directory

 

This directory is intended to provide a reference of family support resources available in our seven state genetics region or available nationally. Information has been complied through the efforts of the Community Collaboration and Family Support Workgroup of the Region 4 Genetics Collaborative (2004-2007). The Region 4 Genetics Collaborative includes Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio and Wisconsin. Members include representatives from state health departments, newborn screening and genetic service laboratories, university medical schools, genetic centers, and family members.

We hope that family members and health professionals assisting families in connecting with resources in the region will find the information useful. Suggestions, questions, comments, and recommendations for additional resources are welcome. Criteria for including a resource in the directory include: applicability to a genetic disorder, accessible by residents of one or more Region 4 state, and web-based information available. By including those family support resources with web-based information available, we can provide a direct link to the resource, reasonably anticipating access to current information.

The Region 4 Family Support Resources directory is not copyrighted. Readers are free to duplicate all or part of the information contained herein. Region 4 requests acknowledgment for any information reproduced in another publication, in accordance with accepted publication standards.