Joel recommends:
Of the
many Internet-based resources devoted to low vision and blindness
issues, there are two that are directly concerned with vision
loss resulting from retinal degeneration that I have found
especially helpful.
The
MD Support Website
offers a rich array of basic information about Macular Degeneration,
the top cause of legal blindness in older American adults
today, in a clear format that's easy for the low vision visitor
to navigate. It has sections with medical explanation, graphical
illustrations of the effects of retinal degeneration, lists
of pertinent books and reference materials, personal experience
articles, and helpful advice, as well as an up-to-date array
of links to other vital sources of information and services.
Perhaps
most importantly for those seeking someone to talk to, it
maintains a discussion forum that can either be used online
or subscribed to as an email list for informative discussion
and vital group support from others who share the challenge
of the MD experience.
The
RP List
,
to which I subscribe, is an email-based forum that has been
my comfort and my primary source of education about Retinitis
Pigmentosa for nearly a decade. There are hundreds of subscribers,
primarily living in the U.S. but also chiming in from places
as widespread as England, India, and Argentina. Not all those
registered subscribers are active, of course, and the list
generates enough daily messages to feel vital but not so many
as to be overwhelming, as can happen with some popular mailing
lists. by subscribing to this list, you can learn about every
new event in RP research from responsible news sources, discuss
practical, social, and emotional challenges with others, benefit
from the expertise of scientific and medical professionals,
and discover a wealth of links to information, products, and
services. Highly recommended. Subscribe, "lurk" for a few
days or weeks, then jump in and participate.
To subscribe to the RP List: send an email with a blank subject
line to:
listserv@maelstrom.stjohns.edu
.
In the message area, type: subscribe rplist (your name, without
the parentheses)
J.D.
http://www.dixonvision.com/rplist/
The
Retinal Degeneration Mailing List
http://www.mdsupport.org
The
Macular Degeneration Support site
http://www.blindness.org/
Website of The Foundation Fighting Blindness. The Foundation
is in the forefront of nonprofits that fund cutting-edge research
and publish information about research, eye care, and low
vision adaptation.
http://www.mdsupport.org/portal/ht
ml
The Macular Degeneration
Portal, which contains descriptions and links to the predominant
Macular Degeneration organizations.
http://members.home.net/dabneyadfm
A retinal degeneration site based in Scotland.
http://www.choroideremia.org
Asite about Choroideremia (related to retinal degeneration)
research
http://www.homebiz101.com/haven/
A site built and maintained by retired journalist Dorothy
Stiefel, with information, support, and links to other responsible
sources.
http://blindness.about.com/
Planet Arrington E-Zine- a site that mixes RP and low vision
information with dialogues and even creative writing
http://members.aol.com/danlrob/MDpeople/thrueyes.html
Through Our Eyes -- A Gallery of Personal Visual Perceptions
http://www.lighthouse.org/low_vision_defined_page2.htm
What the world looks like to people with low vision
http://www.cast.org/bobby/
Bobby - Web sites of the test for Web site accesibility
http://www.w3.org/WAI/
European-based international organization that promotes and
monitors Web site accessibilty
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