This directory is designed for use by families, as well as health and human service professionals who work with children and adults affected by known or suspected genetic diseases, birth defects, and related chronic conditions. When faced with new diagnosis or chronic illness, many families find valuable assistance from voluntary consumer-oriented disease organizations. They may choose to participate in a support group or to obtain educational and referral information.

Now in its 5th edition, we have expanded this directory to include state and local agencies that offer services to families. As in the past, we have also tried to include all relevant support groups with a contact person or chapter in the state of Michigan. Please be sure to let us know about any we have missed. Associations with a regional contact person in a neighboring state are also list. Some listings represent well-established divisions of national organizations, whereas others are informal groups just getting started. Support parents who have expressed interest in networking are also included for certain conditions or regions of the state where no society exists. Since many groups rely on volunteers to answer their telephones, answering machines are often used. The caller should leave a message so that the call can be returned at a later time. All numbers listed have been verified as of the date of this publication.

For those with Internet access, a list with relevant national Internet sites has been added. Fax numbers, e-mail addresses and website information for each group's listing are also included where available, either for the Michigan affiliate or its nation parent organization.

Many support organizations, particularly those for rare disorders, have only a single national office and therefore will not be included in this booklet. Some organizations that can help you locate specific groups at the national level are listed in the section called NATIONAL CENTERS, NETWORKS AND ASSOCIATIONS. The Alliance of Genetic Support Groups publishes an excellent directory of national groups.

This directory has been compiled as a service to Michigan families and the health care, education and social service communities. Listing of groups in the guide does not constitute an endorsement by the Michigan Department of Community Health. We hope you find the information useful and welcome your comments or suggestions for the next revision.