Categories: ALS-Specific | Caregivers | Equipment | Government Agencies | Organizations | Research & Medical Info

If you have a link you think should be added, please email us.
 

ALSA - register to be an advocate

ALS Digest - patient forum, news, updates via email; to subscribe, email bro@met.fsu.edu

Alslinks.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
 

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

Communication Independence for the Neurologically Impaired (CINI) - information on communication technology

Communication Aid Manufacturers Association (CAMA) - not-for-profit manufacturers of augmentative and alternative communication (AAC) software and hardware products.

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
 

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
 

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

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

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.