MND Websites
There are hundreds of websites available on motor neurone disease. Be wary of the information available as anyone can put a site on the web and some can be positively misleading with hopes about miracle cures. The list below will guide you to sites with quality information. Remember if you are searching the internet that motor neurone disease is also known as Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s disease.
OTHER PATIENT ASSOCIATIONS
International Alliance of ALS/MND Associations
Umbrella body for patient associations
Motor Neurone Disease Association (England, Wales & N. Ireland)
Muscular Dystrophy Association – ALS Division
In January 2007 they collaborated with the former ALS Therapy Development Foundation
a not-for-profit biotechnology company dedicated to developing novel therapies*
NEUROLOGY SITES
World Federation of Neurology ALS Page
MEDLINEplus plus interactive tutorial
CARE & RESEARCH CENTRES
King’s MND Care & Research Centre, London
CLINICAL TRIALS/RESEARCH
Clinical Trials Summary from the NIH
search for “amyotrophic lateral sclerosis”
Muscular Dystrophy Association – ALS Division
*ALSTDI – ALS Therapy Development Institute
The Robert Packard Center for ALS Research at John Hopkins University, Baltimore
DRUG INFORMATION
Rilutek is the only drug available to people with MND.
FAMILIAL or HEREDITARY MND
Genetics Home Reference: ALS (National Library of Medicine)
Understanding ALS: Genetic Testing for ALS (ALS Association)
EMAIL LISTS/DISCUSSION GROUPS
There are many forums on the internet but here are two which may be useful
build-uk.net
ALS Digest
An electronic discussion group archive (1998-2004) which connected people with ALS/MND, medical researchers and others interested in the condition. May still be useful.
PATIENT EXPERIENCES (video format on the web)
Speaking From Experience http: //www.realtimehealth.com/conditions/motorneuronedisease
Health Talk Online (formerly Dipex) http://healthtalkonline.org
An award-winning charity website, lets you share in other people's experiences of health and illness. You can watch or listen to videos of the interviews, read about people's experiences and find reliable information about conditions, treatment choices and support.
Patientslikeme www.patientslikeme.com
Only online treatment and outcome sharing community for ALS/MND.
RESOURCES FOR CHILDREN
Lou Gehrig’s Disease (ALS) Nemours Foundation
http: www.kidshealth.org/kid/grownup/conditions/als.html
ALS411- All for Kids
Information booklets for parents, children and teens.
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