Ed.Madara@f140.n150.z1.fidonet.org (Ed Madara) (07/19/90)
Index Number: 9286 Anita's daughter, Jacqueline, was recently diagnosed as having Coffin-Siris syndrome, a disorder characterized by unusually small stature, along with mental retardation and possible craniofacial abnormalities. The doctors paint a bleak picture and have advised Anita that that Jacqueline would never be able to care for herself and that she should place her daughter in an institution. Anita and her husband want to care for Jacqueline at home. > Anita would like to share experiences with other parents who have or have had children with Coffin-Siris syndrome. When she called us and found out that there was no support network currently available for this particular disorder, she said she would be interested in joining with other interested parents to start one. If you know of any parent who would be interested in participating, or any professional interested in supporting such an effort, they may contact her, Anita Ball at 162 Abernethy Drive, Trenton, N. J. 08618. > > Ed at the American Self-Help Clearinghouse -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!150!140!Ed.Madara Internet: Ed.Madara@f140.n150.z1.fidonet.org
Ron.Rothenberg@f460.n101.z1.fidonet.org (Ron Rothenberg) (07/19/90)
Index Number: 9305
EM> called us and found out that there was no support network
EM> currently available for this particular disorder, she said she
EM> would be interested in joining with other interested parents to
Hi Ed, they may want to give the NORD (National Organization for Rare
Disorders) networking system a try. Here's the info.
-rsr-
"NETWORKING" THROUGH THE NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)
A disease which affects fewer than 200,000 Americans is deemed an "Orphan
Disease." There are more than 5,000 such afflictions which strike people of
all ages, all races, and all ethnic backgrounds. Many are genetic, for
example: Tay Sachs, Huntington's Disease, Cystic Fibrosis. Others are
acquired like AIDS, Legionnaires' Disease, etc. A number of "orphans" fall
within the realm of wide spread health conditions such as heart disease and
cancer. For example, cancer will strike an estimated one out of every four
Americans, but only a few subtypes of cancer will affect more than 200,000
people at any one time. Thus, many people with cancer face the same problems
as people with lesser known ailments.
Through NORD's "Networking" program, NORD links people with the same orphan
disorder together for mutual support. In many instances, only a handful of
people in the nation may have an illness, and no voluntary agency or support
group may yet exist for that condition.
If you wish to be put in contact with other people (or families) concerned
about the disorder you inquired about, please print out the form on the next
page and mail it to the address below. NORD will not add the names of third
parties (i.e., teachers, social workers, etc.) to the NORD Networking Program.
Therefore, the patient or his immediate family must sign this form in order to
participate in this program. This form cannot be sent to NORD via E-mail; it
must be sent through the Postal Service.
National Organization for Rare Disorders, Inc. (NORD)
P.O. Box 8923
New Fairfield, CT 06812
(203) 746-6518
The National Organization for Rare Disorders (NORD) keeps names and addresses
confidential unless a voluntary agency exists for the specific disorder, or a
person (or parent) provides written permission for NORD to send their name to
other people (or families) with the same disorder. The NORD Networking Program
is meant to encourage formation of mutual self-help support groups concerned
about a single rare disorder.
PLEASE NOTE: DO NOT SIGN THIS FORM IF YOU DO NOT INTEND TO CORRESPOND WITH
PEOPLE WHO HAVE YOUR SPECIFIC DISABILITY. IF YOU DO NOT ANSWER THEIR LETTERS,
YOU MAY UNNECESSARILY DISAPPOINT THEM.
WRITTEN PERMISSION FORM FOR NORD'S "NETWORKING" PROGRAM
NAME:
ADDRESS:
CITY:
STATE:
ZIP:
TELEPHONE NUMBER:
NAME OF RARE DISORDER:*
CIRCLE YOUR RELATIONSHIP TO THE PERSON WITH THE RARE DISORDER:
PATIENT PARENT SPOUSE
RELATIVE FRIEND
OTHER (SPECIFY)
* PLEASE NOTE: YOU MUST PROVIDE A NAME FOR YOUR DISEASE OR CONDITION. NORD
CANNOT DIAGNOSE PATIENTS NOR CAN WE MATCH NAMES OF PATIENTS ACCORDING TO
SYMPTOMS.
... Her face was her chaperone. - Rupert Hughes
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!101!460!Ron.Rothenberg
Internet: Ron.Rothenberg@f460.n101.z1.fidonet.org