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2d. What are some sources of more information about the disabilities which these tests detect?




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This article is from the Pregnancy Screening FAQ, by Lynn Gazis-Sax (gazissax@netcom.com) with numerous contributions by others.

2d. What are some sources of more information about the disabilities which these tests detect?

There are many organizations which can provide more information, support,
and an opportunity to talk with parents with experience with particular
disabilities. These include the March of Dimes, the National
Organization for Rare Disorders (NORD), the Cooley's Anemia Foundation,
the National Association for Sickle Cell Disease, the Cystic Fibrosis
Foundation, the Spina Bifida Association of America, the National
Tay-Sachs and Allied Diseases Association, the Support Organization For
Trisomy 13/18 (SOFT), and others too numerous to name for a variety of
disabilities. Addresses and phone numbers for some of these
organizations can be found in _Prenatal Tests_ by Robin Blatt, as well as
in _Reaching Out: A Directory of Voluntary Organizations in Maternal and
Child Health_, published by the National Center for Education in Maternal
and Child Health (1985); 8201 Greensborough Drive; Suite 600; McLein,
Virginia 22102.

In some cases, newsgroups and mailing lists can also be found on the
net. For example, alt.support.spina-bifida, bit.listserv.downsyn-l, the
our-kids mailing list for parents of developmentally disabled children
(the address for which can be found in the misc.kids FAQ list). A list
of mailing lists on the Internet is maintained by Stephanie da Silva and
regularly posted to news.answers. A list of support newsgroups is
maintained by John Grohol and also posted to news.answers regularly.
Both of these files can be retrieved by ftp from rtfm.mit.edu, or
requested from the mail server there (to find out how to use this mail
server, send a message to mail-server@rtfm.mit.edu with the subject
"help").

-----------------------------------------
From Trish Jalbert (tjalbert@best.com):

There are lots of sources of info for Down Syndrome, since it is one of the
most common birth defects, occuring in approximately 1 out of 800 live
births. Actually, since about 75% of fetuses with Down Syndrome miscarry,
researchers think that it actually occurs in 1 of 100 to 200 pregnancies. (I
found this amazing.) It is very important to read RECENT literature, as much
has changed in our knowledge base and in our attitudes about people with
disabilities.
Online resources include:
*The Down-Syndrome Mailing List. I've temporarily misplaced the address for
subscriptions- I'll dig it up and send it as soon as I can.
*AOL's Support Groups- Look under the disABILITIES area. There are chat
groups for parents, one specifically for parents of babies, and talk of
adding one for sibs.
Other resources:
*The National Down Syndrome Congress 1-800-232-6372
*The National Down Syndrome Society 1-800-221-4602
Both the DS Congress and the DS Society will send you free info and put you
in touch with local parent support groups.
* A good basic book to read: Babies with Down Syndrome- A New Parents Guide,
edited by Karen Stray-Gundersen, Woodbine House 1986

Also, I would welcome questions. If I don't know the answer, there are other
people I know online who could answer. My e-mail address is:
Tjalbert@aol.com

-----------------------------------------
From Belinda J.F. Rossiter (rossiter@bcm.tmc.edu):

I had asked whether there was any collection of information about genetic
diseases on the Internet, written for the general public. The short
answer is that no there isn't, as far as I can tell, unless you happen to
be a Compuserve subscriber in which case you can access the NORD (National
Organization for Rare Disorders) database. I'm sure that such a resource
will eventually become generally available, but it's not clear who will
actually do this.

Here's what I found out in a bit more detail, with the aid of several
helpful e-mail replies (thank you!):

To my knowledge, there is no universally available Internet source of
information about genetic diseases that is designed for the lay
public. The OMIM (Online Mendelian Inheritance in Man), accessed
through the Genome Data Base home page at "http://gdbwww.gdb.org/", is
a comprehensive database of inherited traits but is too detailed and
technical for a general reader. Various indexes of health resources
on the WWW include the HealthNet WWW Demonstration Project at
"http://debra.dgbt.doc.ca/~mike/healthnet/home.html" and the Health
Resources list at "http://alpha.acast.nova.edu/medicine.html". These
indexes contain links to many useful health-related resources, but I
didn't find anything that provided lay information on genetic
diseases. A few specific disease organizations, such as the Aneurysm
Information Project at "http://www.columbia.edu/~mdt/" have their own
WWW pages, but again not much if anything that is genetic.

NORD (the National Organization for Rare Disorders) provides written
material about hundreds of rare diseases (including but not restricted to
genetic disorders) on request. Two of the objectives of this organization
are (1) to educate the general public and medical profession about the
existence, diagnosis, and treatment of rare disorders; and (2) to act as a
clearinghouse for information about rare disorders and to network families
with similar disorders together for mutual support. NORD has a WWW home
page at "http://www.w2.com/nord1.html", through which it is possible to
access a list of the diseases described and to order reprints at $5 per
article. The database itself cannot be accessed through the Internet
except by Compuserve subscribers.

The other thing I found out is that the NIH is building a database
of lay-type information on genetic and other diseases, called the Combined
Health Information Database. The first upload should be later this year,
and it should be generally available.
-----------------------------------------


Several values questions (probably best addressed by a collection of
personal stories):

 

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