The links to web sites below are monitored and checked on a regular basis by the International Alliance of ALS/MND Associations. Please advise the Alliance at firstname.lastname@example.org if any link is inoperable.
The Alliance has not evaluated the sites for ease of use, coverage of research, or the information contained on sites mentioned below. Some sites may only report on research undertaken by their institution, while other sites may only report on research funded by their organization. The sites have been included in this page because members of the International Alliance have recommended that they be included. The Alliance takes no responsibility for the information provided in web sites accessed from this page.
The Alliance recommends that people who are interested in ALS/MND and wish to receive updates on news about ALS/MND and research should register to receive the Newsletter at www.alsmndalliance.org. This is an opt-in/opt-out site that requires you to register an email address and respond to an email automatically sent by the Alliance to ensure that you wish to receive messages from the Alliance. Information held by this news facility compiles with Privacy Legislation.
Research Web Links
Home page of FUNDELA, a member of the International Alliance, who report on research. All information is in the Spanish language.
Robert Packard Centre for ALS Research. It reports on research conducted at or by the Robert Packard Centre.
Research home page for the ALS Association.
Home page for ALS Therapy Development Foundation.
Research page for the Les Turner ALS Foundation.
Home page of the National Institute of Neurological Disorders and Stroke. NINDS is the funding arm of the US Government.
Research page of the King’s MND Care and Research Centre, King’s College, London.
World Federation of Neurology list of ALS/MND clinics
The National Library of Medicine provides a search facility on medical publications, including PubMed
This site proved a search facility on clinical trials being conducted in the US. This is a service of the National Institute of Health and provides regularly updated information about federally and privately supported clinical research in human volunteers
Home page of the Muscular Dystrophy Association in the US.
Home page of the World Federation of Neurology
Home page of the Massachusetts General Hospital Institute for Neurodegenerative Disease
Home page of the Hope Center for Neurological Disorders based at Washington University in St Louis
Home page of the Eleanor and Lou Gehrig MDA/ALS Research Centre at the Neurological Institute of New York, Columbia University
Research page of the ALS Society of Canada
Home page of the Baylor College of Medicine. Search on “ALS” for research information.
Home page of the National Research Register, Dept of Health. The National Research Register (NRR) is a database of ongoing and recently completed research projects funded by, or of interest to, the United Kingdom’s National Health Service (NHS)
Home page of Neuromuscular Disorders Program Feinberg School of Medicine Northwestern University.
The University of Miami ALS Clinical and Research Center.
University of Miami Department of Neurology.
The Israel ALS organization. It can be accessed in English or Hebrew.
A Yahoo group were persons with ALS and caregivers can get information, share problems and look for solutions.
Keep a treatment diary of the condition you are facing. Tag your entries for easy retrieval – share your diary with others as you choose – make connections with people facing the same challenges, and most importantly, FIND REAL INFORMATION FROM REAL PEOPLE.