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Palliative Care in Amyotrophic Lateral SclerosisFrom diagnosis to bereavement, 2nd Edn$

David Oliver, Gian Domenico Borasio, and Declan Walsh

Print publication date: 2006

Print ISBN-13: 9780199212934

Published to Oxford Scholarship Online: November 2011

DOI: 10.1093/acprof:oso/9780199212934.001.0001

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(p.339) Appendix 2

(p.339) Appendix 2

Palliative Care in Amyotrophic Lateral Sclerosis
Oxford University Press

List of useful websites for ALS patients

Please note: there are thousands of websites which claim to contain information relevant to ALS patients. However, in many cases the information has not been reviewed for accuracy and may sometimes be misleading or even directly aimed at obtaining financial profit by offering “miracle drugs” or other devices with no proven benefit. Therefore, some degree of caution is advisable when surfing the net for information on ALS.

The following websites all have a very high standard and offer reliable information, addresses and links to other websites of interest. This list, of course, is by no means exhaustive.

www.wfnals.org–the World Federation of Neurology ALS site. An excellent site with regularly updated clinico-scientific news on ALS and a worldwide list of ALS specialists and centres.

www.alsmndalliance.org–the International Alliance of ALS/MND Associations. Includes a directory of ALS societies worldwide.

www.alsa.org–the American ALS Association. This site has a great deal of relevant information.

www.mda.org–the American Muscular Dystrophy Association, which also runs a strong ALS care program.

www.lesturnerals.org–the Les Turner ALS Foundation (Chicago). www.als.ca–the Canadian ALS Association.

www.mndassociation.org–the UK Motor Neurone Disease Association. www.scotmnd.org.uk – the Scottish Motor Neurone Disease Association. www.imnda.ie–the Irish Motor Neurone Disease Association. www.dgm.org–the German Neuromuscular Disease Association. www.alslinks.com–an Internet portal for ALS

www.alsnetwork.com–award-winning website dedicated to providing information to ALS patients.

www.focusonals.com–a well-designed website for ALS patients, run by an ALS patient. www.als-tdf.org–The ALS Therapy Development Foundation

www.dunitz.co.uk–contents and abstracts of each issue of the journal, “ALS and other motor neurone disorders”.

www.caregiver.org–the website of the Family Caregiver Alliance www.partnershipforcaring.org–the website of the Partnership for Caring, for carers www.ninds.nih.gov–the website of the National Institute of Health Neurologic Institute (p.340)