Quote:
>My friend's son has been diagnosed with alopecia areata and we are tryilng to
>find out as much about the disease/syndrome as possible.
This information is from the National Organization for Rare
Diseases's database on Compuserve. NORD is an organization that
specializes in information on rare diseases and will put you in contact
with other people or parents of children with the same disease or
disorder. Their address is:
The National Organization for Rare Disorders (NORD)
P.O. Box 8923
New Fairfield, CT 06812 (USA)
Phone: (800) 999-NORD
(In CT): (203) 746-6518
NORD has information on some 500 rare disorders and also has
information on orphan {*filter*}.
NORD can also be reached on Compuserve.
Alopecia Areata is a progressive condition characterized by loss of
hair. The cause is unknown and unpredictable hair loss is the only
noticeable symptom. There are approximately 2 million people affected
in the United States.
Standard treatments are directed at producing regrowth of hair.
Therapies under investigation include a combination of 8-methoxypsoralen
ointment and ultraviolet light exposure and synthetic
immunomodulator {*filter*}.
I am attempting to email you the full set of info from NORD but
mailing to Fidonet is always a bit iffy (I should know, I run a Fidonet
BBS). Contact NORD themselves to get the info as well. Also
your friends should contact:
National Alopecia Areata Foundation
714 C Street Suite 202
San Rafael, CA 94901
(415) 456-4644
Help Alopecia International Research, Inc. (HAIR)
P.O. Box 691487
West Hollywood, CA 90069
(213) 851-5138
The National Arthritis and Musculoskeletal and Skin Diseases Information
Clearinghouse
Box AMS
Bethesda, MD 20892
(301) 468-3235
Bill McGarry
(203) 337-1518
UUCP: {oliveb, philabs, decvax, yale}!bunker!wtm
Fidonet: The Handicap News BBS (141/420) 1-203-337-1607
(300/1200/2400 baud, 24 hours)
Compuserve: 73170,1064
ALOPECIA AREATA