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Palliative Care in Amyotrophic Lateral SclerosisFrom Diagnosis to Bereavement, 3rd Edn$

David Oliver, Gian Domenico Borasio, and Wendy Johnston

Print publication date: 2014

Print ISBN-13: 9780199686025

Published to Oxford Scholarship Online: May 2014

DOI: 10.1093/acprof:oso/9780199686025.001.0001

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(p.315) Appendix List of useful websites for ALS patients

(p.315) Appendix List of useful websites for ALS patients

Source:
Palliative Care in Amyotrophic Lateral Sclerosis
Publisher:
Oxford University Press

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.

  • World Federation of Neurology Research Group on Motor Neuron Diseases/Amyotrophic Lateral Sclerosis: 〈http://www.wfnals.org/〉. An excellent site with regularly updated clinico-scientific news on ALS and a worldwide list of ALS specialists and centres.

  • The International Alliance of ALS/MND Associations: 〈http://www.alsmndalliance.org/〉. Includes a directory of ALS societies worldwide.

  • The ALS Association [of America]: 〈http://www.alsa.org/〉 This site has a great deal of relevant information.

  • The American Muscular Dystrophy Association: 〈http://mda.org/〉. This also runs a strong ALS care programme.

  • The Les Turner ALS Foundation (Chicago): 〈http://www.lesturnerals.org/〉.

  • The ALS Association [of Canada]: 〈http://www.als.ca/〉.

  • The [UK] Motor Neurone Disease Association: 〈http://www.mndassociation.org〉.

  • ScotMND (the Scottish Motor Neurone Disease Association): 〈http://www.scotmnd.org.uk/

  • The Irish Motor Neurone Disease Association: 〈http://www.imnda.ie〉.

  • Deutsche Gesellschaft für Muskelkranke eV [the German Neuromuscular Disease Association]: 〈http://www.dgm.org〉.

  • (p.316) Internet portal for ALS.

  • Award-winning website dedicated to providing information to ALS patients.

  • A well-designed website for ALS patients, run by an ALS patient.

  • The ALS Therapy Development Institute: 〈http://www.als-tdf.org/〉.

  • ALSUntangled, a group of 90 clinicians and scientists representing 10 countries, who have developed a standard method for reviewing complementary and alternative medicines: 〈http://www.alsuntangled.com〉.

  • Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration [official journal of the World Federation of Neurology Research Group on Motor Neuron Diseases], abstracts and contents: 〈http://informahealthcare.com/loi/afd〉.

  • Family Caregiver Alliance [USA]: 〈http://www.caregiver.org〉.

  • Caring Connections [website of the National Hospice and Palliative Care Organization, USA]: 〈http://www.caringinfo.org/〉.

  • Website of the National Institute of Health National Institute of Neurological Disorders and Stroke: 〈http://www.ninds.nih.gov〉.