Links: Online Support Groups and Email Lists
- BLIST: The Comprehensive Index of Blindness-Related Emailing Lists
This is the best list of Blindness related e-mail lists that we've come across - highly recommended!
- Abletech List
To subscribe, send an email to:
ABLETECH-L-request@LISTSERV.OKSTATE.EDU
with the following information in the body of the email (be sure to replace "Your Name" with your real name.)
SUBSCRIBE ABLETECH-L Your Name
ABLETECH-L is a discussion list aimed at parents,
teachers, and others concerned with disabilities and
assistive technology. The main focus of discussion
on ABLETECH-L is the resources available to assist
disabled persons with independent living.
- The Bionic Eye: The Glaucoma Chat Bulletin Board
http://clampett.com/eye.html
The Bionic Eye is a great place to ask questions about Glaucoma and related problems. Also be sure to visit the main Glaucoma Service Foundation to Prevent Blindness site, located at: http://willsglaucoma.org/index.htm. It is a wonderful resource in its own right.
- Choroideremia List
To subscribe, send an email to majordomo@hera.ecs.csus.edu
with the following information in the body of the email
subscribe Choroideremia
Choroideremia was created to facilitate discussion
and the dissemination of information between
people who have been diagnosed with, or who are
interested in, the genetic degenerative eye disease
Choroideremia. Choroideremia, or CHM, is also
known by the name Tapetechoroidal Dystrophy, or
TCD.
- The Leber's Hereditary Optic
Neuropathy Mailing List
To subscribe send an email to
LISTSERV@MAELSTROM.STJOHNS.EDU
with the following information in the body of the email (be sure to replace "Your Name" with your real name.)
subscribe lhon your name
LHON is a support and information mailing list
dedicated to the discussion of Leber's Hereditary
Optic Neuropathy. This genetic complaint is
characterised by a relatively sudden, bilateral loss
of vision and can be very hard to diagnose.
LHON has been established up to focus the
thoughts and feelings of those, or relatives of
those, who are suffering from LHON.
-
MD Support
http://www.mdsupport.org
From their webpage: "This site provides information
and support for people dealing
with macular degeneration and
related diseases of the retina
which may lead to blindness or
other vision impairment."
I highly recommend the MDsupport website, even if you suffer from an eye aliment other than MD. They have an online forum and email list that you can use to ask questions. This is a very friendly and supportive group of people.
- R-BLASTOMA List
To subscribe send an email to
LISTSERV@LISTSERV.ACOR.ORG
with the following information in the body of the email (be sure to replace "Your Name" with your real name.)
SUBSCRIBE R-BLASTOMA Your Name
R-BLASTOMA is an unmoderated discussion list
for persons with Retinoblastoma, their loved ones,
family, and friends. It is also a forum where
patients, family, and friends can interact with
researchers and physicians, to discuss clinical and
nonclinical issues and advances pertaining to
retinoblastoma.
- RP list
The Retinal Degeneration Discussion / Mailing List
http://www.dixonvision.com/rplist/
From thier website: "RPlist is dedicated to discussions related to retinal degenerations. It is open to people personally effected by these conditions, their family and friends, people working in the eye care or low vision fields, and more generally anyone who wants to learn or share experience in relation with retinal conditions".
To subscribe: send a blank email to
rplist-subscribe-request@maelstrom.stjohns.edu
- RP (Retinitis Pigmentosa) and Nutrition Group
Group description: Can nutrition, supplements, or
herbs lessen the effects or reduce the progression of
Retinitis Pigmentosa, a degenerative eye disease?
This group shares information on this subject, as
well as on other non-traditional health alternatives
as they relate to RP. Those with other eye diseases
welcome.
To subscribe, send a blank email to:
rpandnutrition-subscribe@yahoogroups.com
- Usher List
To subscribe send an email to
majordomo@farside.cc.misu.nodak.edu
with the following information in the body of the email.
SUBSCRIBE USHER-LIST
A list intended for the use of individuals who have
Usher Syndrome, their family and friends, and
professionals working either with persons with
Usher or involved in Usher-related research.
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