| Name |
Creator |
 Advice about the links here.
After hours of surfing to update the links here, I have organised them as below to try and help members find what they are looking for. The links in folders are those I feel are less useful initially than the ones listed individually with a description of each site. The individually listed sites have been carefully named to try and keep them together by type as much as possible.
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Articles
Articles featuring HD
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Books, Music, Poems & Songs
These are books, music, poems and songs either written or recommended by members of the Huntington's Disease community, plus the link to the gene2music web site.
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Chat and Group Help
Links to pages which will hopefully help you solve technical problems!
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Club Store
This is the link to The Huntington's Disease Support Club's Online Store.
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Disability
Links to web sites to help disabled people.
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Equinemeet
A application for horse lovers
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Folding@Home Project
Links to pages describing the project: the goal is to understand protein folding, misfolding, and related diseases. Also links to this club's team and forum pages.
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Fund Raising
This folder contains links to sites offering opportunities to raise funds.
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Huntington's Disease Groups At Yahoo
These are the apparently dead or dying groups still listed at Yahoo. If anyone has the time or energy, it would be good to get them re-activated or deleted!
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Local Support Groups
Details of local support groups.
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Medical Sites
These are some medical sites that have been recommended by members.
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Members Personal Web Sites
These are web sites which have been created by individuals, some are members of this group, and are well worth a visit! It might be wise to have a box of tissues handy as these sites can be heart rending.
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National Huntington's Disease Web Sites
These are the web sites of various countries' official HD organisations and includes some web sites produced by branches of these organisations.
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Old Huntington's Disease Groups at Yahoo
These are groups which have been replaced but remain open mainly for access to the archive of messages.
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Old Huntington's Disease Web Sites
These websites appear not to be being maintained now but house a wealth of old information. Their role has largely been taken over by the HD Lighthouse, HOPES, and Huntington's Disease Advocacy Centre (HDAC) sites.
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Some Web Sites On Specific Topics.
These are mainly articles or websites devoted to a single topic such as caregivers, communication & swallowing problems, The Guthrie Centre, etc.
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Videos
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At Yahoo - Australian HD Support Group
(Created on Jun 30, 2002) I would like this group to bring together those who suffer directly and indirectly from this terrible disease with Australasia region in mind. It may make it easier for people downunder to exchange ideas, advice, thoughts and support within our time zones. I am australian mother who has been watching my family being ravaged by HD and I am aware of need for support and understanding in such grave times. So do come out, it helps to talk with each other.
http://au.groups.yahoo.com/group/aussie_hd/ |
sue_twin2
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At Yahoo - HD Caregivers · A safe haven for caregivers.
(Created on Nov 7, 2000) HDCaregivers is designed to be a safe haven for those caring for someone with Huntington's Disease. Members are encouraged to honestly express their feelings and situations with others who have "been there and done that" as well as with those who are anticipating similar situations. The goal is to provide a POSITIVE supportive environment. A caregiver is defined as someone who is actively caring for their loved one with Huntington's Disease at home, or in partnership with an assisted living facility, a nursing home, Hospice, or other care environment. Long distance caregivers are welcome to join as well as those who have lost their loved one to HD but were caregivers in the past. Gene positive and symptomatic persons are not eligible for membership in HDCaregivers.
http://health.groups.yahoo.com/group/HDCaregivers/ |
sue_twin2
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At Yahoo - HD Families
(Created on Jan 7, 2005) This group is for anyone to speak honestly and and open heartedly about this devastating disease. ALWAYS think of the feelings of others and be respectful and tactful. ALSO, as ARLO GUTHRIE says about his church, this is a "bring your OWN religion" club. We won't be preaching any specific religion in here, just FAMILY and as a family we come together with MANY different beliefs and religion. We will respect each others beliefs and non beliefs. We hope to learn from each other. Steve and Pat Wolf
http://health.groups.yahoo.com/group/hdfamilies/ |
sue_twin2
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At Yahoo - HDSA Youth - HDSA National Youth Alliance
(Created on Jul 6, 2001) The National Youth Association is for people ages thirty and under with Huntington's disease in their lives. This could be a pHD (person with HD), somebody at risk, a caregiver, a friend, etc. We are here to support each other, and fight to be the first generation WITHOUT Huntington's.
http://groups.yahoo.com/group/HDSAyouth |
sue_twin2
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At Yahoo - Huntington's At Risk
(Created on Apr 25, 2000) A place to talk about being at risk. I created this page for anybody, but with people at risk in mind. I am At Risk and so is my brother, we lost our dad Jan-07-2000 due to complications of Huntingtons Disease.
http://clubs.yahoo.com/clubs/huntingtonsatrisk |
sue_twin2
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At Yahoo - Huntington's Disease Online
(Created on Jan 10, 2005) This group offers support to people and families affected by Huntington's Disease, started by one with the disease.
http://health.groups.yahoo.com/group/Huntingtons_disease_online/ |
sue_twin2
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At Yahoo - Huntington's Disease Support
(Created on Jul 31, 2000) This is an International Rare Disease Support Network (IRDSN) eGroup open to anyone interested in making friends, sharing information and providing support for persons affected by 'Huntington's Disease'.
http://health.groups.yahoo.com/group/Huntingtons_Disease/ |
sue_twin2
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At Yahoo - Huntington's Disease Support Club Photo Annexe
(Created on Apr 29, 2003) Since the photo section of the original club (http://groups.yahoo.com/group/huntingtonsdiseasesupportclub/) is almost full, I have opened this annexe to create additional photo storage space.
http://health.groups.yahoo.com/group/huntingtonsdiseasesupportclubphotoannexe/ |
sue_twin2
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At Yahoo - Huntington's Disease Support Group
(Created on Sep 5, 2005) This group is for People with Huntington's Disease, Family members of someone with Huntington's and Friends of someone with it. This is a place for us to get to know other people who are in similar situation's or have been through it before. Caregivers and first hand. This is a place to talk and get as much support as possible and talk about every day things in life and anything else. I hope everyone enjoys this group and we can all have fun!!
http://health.groups.yahoo.com/group/HuntingtonsDiseaseSupport/ |
sue_twin2
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At Yahoo - JHD Caregivers - Juvenile HD Caregiver Club
(Created on Nov 6, 2001) This list is for all family members of a child with JHD to meet and discuss the special needs involved with raising and caring for a child with Huntington's Disease.
http://groups.yahoo.com/group/JHDCargivers |
sue_twin2
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At Yahoo - The UK Huntington's Disease Forum
(Created on Apr 8, 2006) This group has been created so that those at-risk or facing Huntington's Disease can chat to other Brits. Most of the other yahoo groups, whilst helpful, tend to be dominated by those from the USA and other countries. Everyone is welcome here; but this group is primarily for those living in the UK :)
http://health.groups.yahoo.com/group/ukhuntingtonsdiseaseforum/ |
sue_twin2
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BrainTalk Communities - Huntington's Disease Forum
Online Patient Support Groups for Neurology. These forums are owned and managed by BrainTalk Communities Inc., a Massachusetts non-profit corporation operating as a public charity.
http://brain.hastypastry.net/forums/forumdisplay.php?f=163 |
sue_twin2
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ClinicalTrials.gov
ClinicalTrials.gov provides regularly updated information about federally and privately supported clinical research in human volunteers. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details. The information provided on ClinicalTrials.gov should be used in conjunction with advice from health care professionals.
http://clinicaltrials.gov/ct/gui |
sue_twin2
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Club Map
Add yourself to our map so we can see where everyone lives!
http://www.frappr.com/huntingtonsdiseasesupportclub |
sue_twin2
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Dementia/ HD information
informative website with HD info
http://www.about-dementia.com/huntingtons/index.php |
fanork97
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Euro Huntington's Disease Network
The Euro-HD Network aims to provide a platform for professionals and people affected by HD (and their relatives) to assist working together throughout Europe. It aims to facilitate natural history studies and interventional trials meeting high standards thus helping on the road towards a cure of HD.
http://www.euro-hd.net/ |
sue_twin2
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HD Lighthouse
The HDLighthouse Mission is to present and explain the latest research findings so that HD families can have hope for the future and become proactive in their care and make good decisions in the present.
http://hdlighthouse.org/ |
sue_twin2
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HOPES: Huntington's Outreach Project for Education, at Stanford
HOPES is a team of students and faculty at Stanford University working to build a public web resource on Huntington's disease. Our goal is to complement the Huntington's Disease Advocacy Center (HDAC) website by focusing on the scientific side of HD.
http://www.stanford.edu/group/hopes/ |
sue_twin2
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Hereditary Disease Foundation
Our program includes research grants, John J. Wasmuth postdoctoral fellowships, Milton Wexler postdoctoral fellowships, the Lieberman Award, as well as our fast-track Cure HD Initiative (CHDI). A centerpiece of the Foundation is the program of interdisciplinary Mary Jennifer Selznick workshops held many times during the year. These small, informal, free-wheeling workshops foster dialogue among researchers, from a variety of fields, who come without prepared lectures or slides to converse across disciplinary borders.
http://www.hdfoundation.org/ |
sue_twin2
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High Q Foundation
The High Q Foundation, Inc. is a private philanthropic foundation that was established in 2002 with the mission of bringing together academia, industry, governmental agencies, and other funding organizations in the search for Huntington's disease (HD) treatments. The Foundation supports numerous projects related to HD, including basic research, a drug-discovery program, and clinical studies.
http://www.highqfoundation.org/ |
sue_twin2
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Huntington Project
The Huntington Project brings together clinical and basic scientists, individuals and families affected by Huntington’s disease (HD), advocacy groups, and all others in the HD community to find and develop treatments that make a difference in the lives of those affected by HD. By engaging the entire community in the planning and execution of clinical research, the Huntington Project will maximize the efficiency and fruitfulness of the search.
http://www.huntingtonproject.org/ |
sue_twin2
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Huntington Study Group
The Huntington Study Group (HSG) is a non-profit group of physicians and other health care providers from medical centers in the U.S., Canada, Europe and Australia, experienced in the care of Huntington patients and dedicated to clinical research of Huntington's disease.
http://www.huntington-study-group.org/ |
sue_twin2
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Huntington's Disease Advocacy Center
Marsha, Cristy and Steve first met as a team on April 1st, 2000 (yes - April Fools Day) to discuss ways of providing help to caregivers, families, and patients with Huntington's Disease (pHDs). Our goal is to find answers for the numerous questions that pHDs and those who give care to pHDs face. Our tool is the Huntington's Disease Advocacy Center (HDAC) Web site.
http://www.hdac.org |
sue_twin2
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Huntington's Disease Clinical Research
This site aims to bring together information about clinical research projects in Huntington's disease (HD) for patients, carriers of the HD gene,family members and carers. Clinical research in Huntington's disease is entering a new era. We are already running clinical trials into treatments that may slow down progression of the disease. There are many new treatments that have been shown to be effective in animal models of HD and are waiting to be tested in humans.
http://hdresearch.ucl.ac.uk/index.html |
sue_twin2
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Huntington's Disease Drug Works (HDDW)
Connecting HD people to HD research. Our mission is to create and coordinate a medically supervised system in the home community for people affected by Huntington's disease which allows for and promotes: 1) The individual's access to and medical supervision for drugs of potential therapeutic benefit; 2) The individual's assessment for potential therapeutic benefit of a drug or drugs. HDDW's single goal: the earliest possible therapeutic benefit is correctly identified and used in individuals of this generation of Huntington's people.
http://hddrugworks.org/ |
sue_twin2
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Huntingtons Disease Helping Hands Video
This video was a high school project about the HD residents at Leisure Chateau Nursing Home in Lakewood New Jesey. It is a very moving video and well worth viewing. If uou have a dial-up connection it will take awhile to load. Have patience, its worth it. Make sure your speakers are on.
http://www.youtube.com/watch?v=5iJuRkMV0UM |
elric428
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MGH Chat Rooms
The new chat rooms at MGH.
http://brain.hastypastry.net/forums/chat/flashchat.php |
sue_twin2
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MGH Huntington's Disease Forum
BrainTalk Communities' Huntington's Disease Forum.
http://brain.hastypastry.net/forums/forumdisplay.php?f=163 |
sue_twin2
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WeAreHD
A social network dedicated to those with HD.
http://www.wearehd.org |
cseta
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