Ed.Madara@f140.n150.z1.fidonet.org (Ed Madara) (07/19/90)
Index Number: 9310 Ron Rothenberg @ 101/460 was kind enough to respond to my message about Anita Ball of Trenton NJ, who is trying to start a national/international support network for parents of children with Coffin-Siris syndrome. He suggested: RR> She may want to give the NORD (National Organization for Rare RR> Disorders) Networking Program a try. Here's a copy of the form RR> that NORD uses for that program. > Thanks very much Ron. Hopefully, a number of people will use NORD and their program. You may be interested to know that NORD has a toll-free national number, 1-800-999-NORD, available weekdays. Anita has been in contact with NORD and is registered with their Networking program. NORD had referred her to us because we provide free materials and assistance. We've worked with NORD and have presented at two of their previous national conferences. Our program focuses upon the development of new self-help groups and support networks, and we are not limited to rare disorders. For example, we've helped individuals to start international networks for issues ranging from carpal tunnel syndrome to postpartum depression. We add info on individuals seeking to develop new types of self-help groups to our MASHnet database, which is used by 15 area self-help clearinghouses in the US and Canada. Our staff is small, but have come from "the ranks." Two are blind, one is a polio survivor, another is hearing-impaired, one has a manic depressive condition (and serves as VP of the national self-help group), and another lost her brother to AIDS and had started an AIDS group. We also publish a directory of national and model member-run self-help groups- the third edition of which will come out this September. > For help with finding or forming a Mutual Aid Self-Help group, or learning about the availability of any local self-help clearinghouse service, individuals can reach us by voice at (201) 625-7101 or by TDD at 625-9053. If you would like a packet of information by snail mail, leave your address here or drop us a note at: American Self-Help Clearinghouse St. Clares-Riverside Medical Center Denville, NJ 07834 Thanks again for your kind response. It's comforting to know that there's really such darn good resource people on the planet as yourself, taking the time and effort to network people with the help they need. Take care and hope, - Ed -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!150!140!Ed.Madara Internet: Ed.Madara@f140.n150.z1.fidonet.org