ALS Web Resources
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The Web is a valuable source of information, however, there are some cautions.
We would encourage you to read the following article to enable you to assess online health information.
How to Assess Online Health Information - Five Questions to Ask
article originally posted on womenshealthmatters.ca
Statistics tell us that most web users now look for health information online at least occasionally, and that many of us see the web as an important source of health information. In response to this interest, there are literally thousands of sites that offer health information on various topics.
Among the crowd, how do you decide whether a website is a reliable source of information? Lori Lyons, former Women’s Health Matters Content Manager, offered some thoughts on the subject.
The ALS Society of Canada does not endorse and is not responsible for the content of external sites.
Links will open in new window.
Provincial ALS Societies with web sites:
We would encourage you to read the following article to enable you to assess online health information.
How to Assess Online Health Information - Five Questions to Ask
article originally posted on womenshealthmatters.ca
Statistics tell us that most web users now look for health information online at least occasionally, and that many of us see the web as an important source of health information. In response to this interest, there are literally thousands of sites that offer health information on various topics.
Among the crowd, how do you decide whether a website is a reliable source of information? Lori Lyons, former Women’s Health Matters Content Manager, offered some thoughts on the subject.
The ALS Society of Canada does not endorse and is not responsible for the content of external sites.
Links will open in new window.
Provincial ALS Societies with web sites:
- ALS Society of Alberta
www.alsab.ca - ALS Society of British Columbia
- www.alsbc.ca
- ALS Society of Manitoba
http://www.alsmb.ca - ALS Society of Newfoundland & Labrador
www.envision.ca/webs/alsnl - ALS Society of Ontario
www.alsont.ca - ALS Society of Quebec
www.als-quebec.ca - ALS Society of New Brunswick
www.alsnb.ca - ALS Society of Nova Scotia
www.alsns.ca
- www.alsmndalliance.org
International Alliance of ALS/MND Associations – This site includes a directory of ALS/MND organizations worldwide as well as research reports from the latest International Symposium on ALS/MND - www.alsa.org
The ALS Association - www.lesturnerals.org
The Les Turner ALS Foundation Chicago ALS organization - www.mdausa.org/disease/als.html
Muscular Dystrophy America also supports people with ALS and funds ALS research
www.march-of-faces.org - March of Faces - raising awareness project
Special Friends
- Web SuperGoo - we would like to thank the Websupergoo group for the free use of their PDF generation utility available here: http://www.websupergoo.com/abcpdf-8.htm
- ALS/MND Support Groups - the location of the new online forums monitored by Volunteers and Supporters of people affected by ALS/MND
Resources for children:
March of Faces space for kids
http://www.march-of-faces.org/KIDS/moe1.html
Primary Lateral Sclerosis - PLS:
- Primary Lateral Sclerosis – maintained by an individual with PLS
- PLS Help Group - maintained and monitored by volunteers
Basic information – Sponsored by a research organization:
- Amyotrophic Lateral Sclerosis
- NINDS Amyotrophic Lateral Sclerosis Information Page
- NORD - Amyotrophic Lateral Sclerosis
- MDA US - ALS Division
- MDA/ALS Clinic... A Team Approach - Baylor College of Medicine, Texas
- Neurology Channel
- University of Chicago
Basic information:
- Amyotrophic lateral sclerosis (ALS) - commonly known as Lou Gehrig's disease - is a neuromuscular disorder
- The latest medical news and information for patients or friends/parents of patients diagnosed with ALS.
Research:
- The World Federation of Neurology ALS Site
www.wfnals.ca - The Eleanor and Lou Gehrig MDA/ALS Research Centre
http://www.columbiaals.org/ - The Robert Packard Centre for ALS Research at Johns Hopkins
http://www.hopkinsmedicine.org/alscenter/index.cfm - The ALS Therapy Development Foundation
www.als-tdf.org/alstdf/ - The ALS C.A.R.E. Program is a voluntary, physician-directed program to improve outcomes for patients diagnosed with ALS
www.umassmed.edu/outcomes/als/
Clinical Trial Database - Mainly US. Search by disease - http://clinicaltrials.gov.
About Rilutek - manufacturer site - http://www.alsinfo.com/index.jsp.
Assistive Technology:
- http://www.tetrasociety.org/ - A voluntary organization of Canadian and US engineers and technicians who help to solve your assistive devices challenges
- www.abledata.com - Information on assistive technology and rehabilitation equipment sponsored by the US National Institute on Disability and Rehabilitation Research
- www.speakingdifferently.org - Speaking Differently is a national organization for persons with dsabilities who communicate in different ways.
General Health Resources:
- http://chp-pcs.gc.ca/CHP/index_e.jsp
Canada Health Portal Access to Authoritative and Trusted Information and Services - http://www.canadian-health-network.ca/
Canadian Institute for Health Information - http://secure.cihi.ca/cihiweb/dispPage.jsp?cw_page=home_e
The Canadian Health Network - Health Info for every body - http://health.discovery.com/
Discovery Channel Health Site - The Canadian Hospice Palliative Care Association
http://www.chpca.net/
Stem Cells:
- Australian Stem Centre Patient Handbook
http://www.stemcellcentre.edu.au/For_the_Public/Patient/Handbook.aspx
Individual web sites:
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George Goodwin (www.alsindependence.com)
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Al Pickens (www.alslinks.com/)
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Cheryl Mathews Prock (www.alsnetwork.com)
Hospice & Palliative Care
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A Canadian Virtual Hospice (www.virtualhospice.ca)
Caregiving:
- How To Care (www.howtocare.com)
- CPCHA (www.cpca.net)
- Allianz (www.allianz.ca)
- Canadian Caregiver Coalition (www.ccc-ccan.ca)
- Family Caregivers Network Society (www.fcns-caregiving.org)
- Caregiver Network (www.caregiver.on.ca)
- Family Caregiver Magazine (www.thefamilycaregiver.com)
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