Resources
Networking & Information

American Self-Help Clearinghouse provides help in location or starting a support group for any area of concern, especially rare disorders. Saint Clares-Riverside Medical Center, 25 Pocono Road, Denville, NJ 07834. 201/625-7101, CompuServe7O275,1003.

Brachial Plexus/Erb's Palsy Support & Information Network provides support, up-to-date information and a parent-to-parent matching service. P.O. Box 533, Menasha, WI 54952. Phone: Brenda Moore 414/836-3843; Alicia Herides 414/426-9541; or Jeanne Bruski 414/687-0244.

The Brachial Plexus Network out of San Diego is a support and informational network for parents and friends of children with brachial plexus injuries. Contact: Cathy Kanter, 1243 Diamond Street, San Diego, CA 92109. Phone: 619/490-0140.

The Brachial Plexus Palsy Foundation was founded to generate funds for causes designed to aid in the prevention and awareness of brachial plexus palsy. 210 Springhaven Circle, Roversford, PA 19468. Phone: Trish and Tom Cirino 610/792-0974.

Brachial Plexus Program, Texas Children's Hospital, 1102 Bates, MC3-2311, Houston, TX 77030. Phone: 713/770-3290. The Brachial Plexus Program has a team of professionals that work together to evaluate and treat children who have had brachial plexus injuries. Call for more information and ask to speak to the Program Coordinator.

Exceptional Parent Magazine is a national publication devoted to issues surrounding parenting a child or young adult with a disability. An excellent source or support, connection and information. 209 Harvard Street, Suite 303, Brookline, MA 02146-5005. FAX 617/730-8742. 800/247-8080 to subscribe.

Grandparent-to-Grandparent offers support groups, workshops and a phone support program for grandparents of children with disabilities. PACER Center, Inc. 4826 Chicago Ave. South, Minneapolis, MN 55417-1098.

The Long Distaiice Love Support Network is a nonprofit organization that connects people who have the same health problems for the purpose of mutual support. P.O. Box 114, New Brunswick, NJ 08903. Phone: In New Jersey: 1-800-48-FRIEND. Outside New Jersey: 908/418-1811. FAX: 908/249-9897.

MUMS (Mothers United for Moral Support) Inc., is a national organization for parents and caregivers of children with any disability. Mums provides a parent-to-parent matching service, and connects parents with support groups in their area dealing with their child's specific disability or assists them in forming their own group. Mums has a database of almost 6,000 families covering 1,500 disorders, and they network with other organizations that also do matching. 150 Custer Court, Green Bay, WI 54301-1243. Phone: 414/336-5333. FAX: 414/339-0995.

National Fathers' Network provides networking opportunities, distrubutes a newsletter, develops support and mentoring programs and creates curriculum promoting fathers as significant, nurturing people in their children's and families' lives. The Kindering Center, 16120 N.E. Eighth Street, Bellevue, WA 98008. 206/747-4004.

The National Organization for Rare Disorders (NORD), is a federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases. (Erb's Palsy is considered a rare disorder.) NORD's Rare Disease Database lists over 1,000 rare disorder entries. Disorder-specific literature is available for ordering, and NORD has a networking program to help put families with the same diagnosis in touch with each other. P.O. Box 8923, New Fairfield, CT 06812-8923. Phone: 203/746-6518.

National Parent to Parent Support & Information System, Inc. (NPPSIS), is a national database linking families with special health care needs or rare disorders. NPPSIS also provides parents with health care information, resources and referrals. P.O. Box 907, Blue Ridge, GA 30513. Plione: 800/651 -1151. FAX: 706/632-8830. E-Mail: Judd103w@wonder.em.cdc.gov

National Patient Air Transport Hotline (NPATH) is maintained by Mercy Medical Airlift to insure equal access to distant specialized medical treatment. It is the nation’s only "single source" of information on the full spectrum of long-distance patient air transport. 800/ 286-1217.

Superkids newsletter is a wonderful resource for families and friends of children with limb differences. 60 Clyde Street, Newton, MA 02160.