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World Wide Web Related Links |
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Categories: ALS-Specific |
Caregivers | Equipment | Government
Agencies | Organizations |
Research & Medical Info
If you have a link you think should be added, please email us.
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ALS-Specific
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ALSA - register
to be an advocate
ALS Digest - patient forum, news, updates via email;
to subscribe, email bro@met.fsu.edu
Als-links.com - portal to
useful Internet Resources for the ALS community, including petition drives
Learning to Fall: The
Blessings of an Imperfect Life, book about his life since the diagnosis
of ALS by Philip Simmons
Turning Points in ALS -
personal stories and practical information about living with ALS
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| Caregivers |
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Family Caregiver
Alliance - support organization for caregivers, includes information
specific to ALS as well as other disorders
Hospice Association of
America - trade association for hospice providers; consumer guide on
this site offers tips and guidelines on choosing hospice care.
National Hospice Foundation
- public advocacy and information organization in support of hospice
Last Acts Campaign - an
advocacy membership organization to improve care of the dying; Honorary Chair
is former First Lady Rosalynn Carter.
National
Association for Home Care - trade association for home care and hospice
providers; contains information in its consumer section about how to choose a
home care provider, including accrediting agencies.
National Hospice and Palliative
Care Organization - has a national directory to find NHPCO-member
hospices
Well Spouse Foundation
- nonprofit, association of spousal and partner caregivers
WidowNet - an
information resource for, and by, people who have suffered the death of a
spouse or life partner
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Equipment
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Communication Independence
for the Neurologically Impaired (CINI) - information on communication
technology
The Darci
Institute - not-for-profit company produces computer devices for people
with disabilities.
Click-N-Type - an
on-screen keyboard with dwell-click capability and "Point-N-Click," a virtual
mouse program; both are free.
Nathaniel H.
Kornreich Technology Center - not-for-profit that evaluates assistive
technology
ReadPlease 2003 - free
utility for converting text to speech
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| Government
Agencies
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BenefitsCheckUp
- free service that identifies federal and state assistance programs for older
Americans; created by National Council on Aging.
Centers for Disease Control and
Prevention - disease prevention and control, environmental health, and
health promotion and education
Department of Labor
- directory of each state's DOL offices
Department of Health and Human
Services
National Institute on Deafness
and Other Communication Disorders - conducts biomedical and behavioral
research in hearing, balance, smell, taste, voice, speech, and language.
Nebraska Health and Human
Services - helping people live better lives
through effective health and human services.
VA Health Benefits
& Services - Veterans Health Administration website for programs,
eligibilty, benefits information and forms.
Social Security and Medicare
Centers for Medicare & Medicaid
Services (CMS) - the federal agency that administers Medicare, Medicaid
and the State Children's Health Insurance Program
Medicare. gov - the
official U.S. government site for Medicare information
Social Security
Administration Disability Planner - outlines benefits, who can receive
benefits on your earnings record, how to apply and who qualifies.
Social
Security Office Locator by Zipcode
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| Organizations |
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Consortium for Citizens
with Disabilities - national public policy advocacy organization, 100+
member organizations
International
Alliance of ALS/MND Associations - forum for support and the exchange
of information between the worldwide associations
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Research & Medical Info
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Trials
ClinicalTrials.gov -
current information about clinical research studies, developed by NIH. Also
describes clinical trial process and has listing of enrolling trials.
CenterWatch Clinical Trials
Listings Service - provides an extensive list of IRB approved clinical
trials being conducted internationally; also lists promising therapies newly
approved by the FDA
Research Organizations
ALS C.A.R.E. Project
- a voluntary, physician-directed database of outcomes for ALS patients
The Robert Packard Center for ALS
Research at The Johns Hopkins University - research focuses entirely on
new therapies to slow or cure ALS
Genetic Societies -
helpful links to genetic research sites
Northeast Amyotrophic
Lateral Sclerosis Consortium (NEALS)- nonprofit research group, 25
clinical centers participate in trials
University of Miami ALS
Clinical and Research Center - website of this research center details
research projects, news and other research clinics around the country.
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