Resources and Links

CDC’s National ALS Registry and Resource Page

This page not only has resources for PALS and caregivers, but also allows PALS and others to register with the National ALS Registry.  The National ALS Registry is a program to collect, manage and analyze data about persons with ALS (PALS). It includes data from existing national databases and information provided by persons with ALS who choose to participate. Researchers can use Registry data to look for disease pattern changes over time and try to identify whether there are common risk factors among PALS. Additionally, the Registry provides updated links for participant resources like ALS clinical trials.


ALS Clinical Trials


ALS Association – Patient Resources 

Visit this site for Living with ALS Manuals, Factsheets, brochures, videos and more. 


Communication Resources


ALS Association North Carolina Chapter

The ALS Association North Carolina Chapter is a Foundation partner and serves North Carolina. This link provides information on Chapter services available in North Carolina, ranging from grants to support groups.


Hertford ALS Support Group

When: Typically meets on 2nd Monday of every month, 1:30 – 3:30 pm
Where: Perquimans County Library, 514 S. Church St., Hertford, NC
Please contact Sherry or Tommy Harrell ,at 252-426-5145 for more information and confirmation of dates.


Muscular Dystrophy Association – ALS Division


National Institute of Neurological Disorders and Stroke – ALS Page


ALS Advocacy Blog


VA ALS Registry

National Registry of Veterans with ALS – enrollment stopped September 2007, however this page provides information on that initiative.