Traveling with ALS
- ALS connection http://www.alsconnection.com
Among the few existing databases is the new ALS Connections registry funded
by MDA and run by Robert Miller through the Forbes Norris MDA/ALS Research
Center in San Francisco. Itís the online version of the paper-based
ALS C.A.R.E. registry.
"This is a registry for Amyotrophic Lateral Sclerosis (Lou Gehrig's Disease,
or ALS) intended to help Persons with ALS (PALS) reach out to each other
and stand up and be counted. It was originally started as a mailing list
by Bobby Brannigan, PALS and PatientsLikeMe community member, and it is
now being maintained by PatientsLikeMe. If you are a PALS, you can add your
name by signing up for a PatientsLikeMe account and filling out your profile."
- Abledata is a federally funded
project whose primary mission is to provide information on assistive technology
and rehabilitation equipment available from domestic and international sources
to consumers, organizations, professionals, and caregivers within the United
- THE ALS CHAT PAGE
A feature of the MDA (Muscular Dystrophy Association).
ALS FORUMS.COM An
on line support group for all persons that have been affected by amyotrophic
lateral sclerosis and motor neuron disease. This includes people afflicted with
motor neuron disease, their friends, families, and loved ones. ALS forums is
a community where you can ask questions, discuss concerns, voice your thoughts
"Living With ALS" Yahoo Group. For people living with ALS and their caregivers
to communicate with the ALS community immediately, to share information, ideas,
support and fellowship.
NORD has partnered
with ClinicaHealth to create a free, unique online community service for rare-disease
patients, their families, and caregivers. It will be a place where people can
find and support one another, share stories, and build a network of online friends.
Visit the community.
"Find patients just like you. Learn from others who know. " Free
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