EURO
HD NETWORK
On this page you find information about the EHDN project (objectives, organisation,
people activities on board of directors, central coordination and language coordination,
working groups,etc), sponsor of EHDN, participating study sites and ongoing
studies (REGISTRY and PREDICT).
www.euro-hd.net
Richard Dubinsky's homepage:
CARING FOR PEOPLE WITH HD
From the Kansas Univesity Medical Center. Deals primarily with issues of patient
care and management.
http://www.kumc.edu/hospital/huntingtons
THE HOPES WEBSITE
HOPES, (Huntington's Outreach Project for Education at Stanford) is a team of
students and faculty at Stanford University working to build a public web resource
on Huntington's Disease.
Specially interesting the explanation about DNA.
http://www.stanford.edu/group/hopes/
Renette Davis' homepage:
HUNTINGTON DISEASE INFORMATION
A lot of information as well as links to medical information and conference
reports.
http://www.lib.uchicago.edu/~rd13/hd
THE HEREDITARY DISEASE FOUNDATION
This foundation was founded by Dr. Nancy Wexler to foster and fund research
for HD and other hereditary diseases
http://www.hdfoundation.org
NECTAR
Nectar is focused on the promotion of transplantation and restoration in disorders
o the central nervous system.
www.nesu.mphy.lu.se/nectar
THE HD LIGHTHOUSE
If you are looking for the last news this is the page
http://www.hdlighthouse.org
HUNTINGTON'S DISEASE ADVOCACY CENTER
A very good place with information and good stories
http://www.hdac.org
HUNTINGTON'S DISEASE SUPPORT INFORMATION
A website specialy useful if you live in the USA. It has links to all american
HDSA chapters.
http://endoflifecare.tripod.com/juvenilehuntingtondisease/id145
THE CURE HD.COM PAGE
Don't miss the "Caregiver's Handbook For Advanced-Stage HD". A very good work
by Jim Pollard.
http://www.curehd.com
THE
DYSPHAGIA WEBSITE
A website for all
you need to know about dysphagia and swallowing difficulties.
www.dysphagiaonline.com/en/index.jsp
HUNTINGTON'S DISEASE FORUM
In this adress, hosted by the Massachusetts General Hospital, you will find
a forum related only to HD. Very interesting.
http://neuro-www.mgh.harvard.edu/forum/HuntingtonsDiseaseMenu.html
HUNTINGTON'S DISEASE MAILING LIST
This mailing list was started by Storm King in 1996. Its members have a common
interest in HD. Some have HD, some are positive, some are at risk, some are
caregivers and some are doctors or genetic counselors. They are a wonderful
group of people all trying to help each other with information and support.
At the end of 1998 there were more than 300 members all over the world.
To subscribe this list send
an e-mail to:
listserv@listserv.icors.org
Leave the subject line blank and in the body of the mail message type the following: subscribe hunt-dis yourfirstname, yourlastname. Send the message and in a few minutes you should get a reply back.
MAILING LIST IN SPANISH
And if you are looking for a mailing list in spanish you can subscribe to huntington@eListas.net.
To do so, just send a message to huntington-alta@eListas.net.
You can let the subject and the body of the mail blank.