For Persons with ALS

The diagnosis of ALS is a life-changing event for you and your family. This can be an emotional time for everyone involved. For many patients, taking part in the National ALS Registry is a way to contribute to the fight against this disease.

The National ALS Registry was created by Congress to help find out who gets ALS, how many people in the United States have ALS, and most importantly, to find out what are the risk factors for ALS. Since launching in October 2010, the Registry has allowed patients to take part and help researchers try to answer these questions. The information that is gathered from persons with ALS will allow researchers to make progress in the fight against ALS.

ALS Research Counts on You

Persons with ALS can join the Registry safely and securely. There is no cost to join, and it is completely voluntary. Persons with ALS who join can:

  • Take risk factor surveys that may ask about where they worked, lived, sports they played, military and job history, as well as other questions.
  • Learn how they can donate their blood and saliva to the National ALS Biorepository to help researchers in the study of biomarkers, genetics of ALS, how the disease progresses, and potential treatments
  • Choose to receive emails about clinical trials and epidemiological studies. Watch the video that explains more about the Registry.

Organizations that Offer Support and Help

Persons with ALS and their caregivers do not need to fight this battle alone. Help is available from the following national and local organizations. (Note, the CDC/ATSDR does not endorse the content on the respective websites).

  • ALS Association: largest ALS organization in the United States serves persons with ALS and supports caregivers.
  • Muscular Dystrophy Association: organization that also serves persons with ALS and their caregivers.
  • Les Turner ALS Foundation: organization that servers persons with ALS and their caregivers in the Chicagoland area.
  • ALS Untangled: provides information to persons with ALS about treatments and helps to identify misinformation.

Resources for Veterans

Veterans are twice as likely to develop ALS as those who have not served. There are benefits available for veterans that are not available for civilians. To learn more about these benefits, click here.

Join ALS Registry