Mass General offers links to other useful resources.

Where can I find more information about ALS?

Research is a website that provides patients, family members, health care professionals, and other members of the public easy access to information on clinical studies on a wide range of diseases and conditions. Information is provided and updated by the sponsor or principal investigator of the clinical study and the website is maintained by the U.S. National Library of Medicine (NLM) at the National Institutes of Health (NIH).

Northeast ALS Consortium (NEALS)

Comprehensive ALS clinical trial database, clinical trials 101 information, and blog to keep patient and caregiver communities well-informed about clinical research, trial opportunities, and scientific advancements world-wide. OR

National ALS Registry

The Center for Disease Control’s (CDC) growing registry of ALS patients to help improve understanding of who gets ALS and factors that affect disease.

To register: Go to website, click on “Join The Registry” located in the left hand column and follow the instructions


ALS Association (ALSA)

Leading the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig's Disease and their families to live fuller lives by providing them with compassionate care and support.

  • Click on “In Your Community”
  • Select “State” under “Find your local chapter”
  • To register for the Massachusetts Chapter:

ALS Charitable Foundation

Organization dedicated to raising funds for research to cure ALS in the future and providing patient services in support of those living with Amyotrophic Lateral Sclerosis today.


An organization is an unprecedented partnership of the top leaders, researchers, doctors and caretakers in ALS from MGH, UMass Medical School, Harvard Medical School, ALS Therapy Development Institute, and Compassionate Care ALS. Together, this team has identified the strongest therapeutic opportunities in ALS, and has developed a plan with the goal of bringing a treatment or cure to patients.

Compassionate Care ALS

Organization dedicated to supporting ALS and their families through direct services, education, and equipment, while maintaining a holistic presence.

To register: E-mail or call 508-444-6775

Muscular Dystrophy Association (MDA)

The MDA’s website contains sections on advocacy, clinical trials, support groups, research news, and more.

To connect to MDA/ALS:

  • To register: Sign a registration paper at clinic with your nurse or MDA representative
  • Or contact the MDA Resource Center: 1-800-572-1717, Option 1


ALS Finding a Cure® Foundation

The purpose of this foundation is to fund research to find a cure for ALS. The goal is to translate funding into cutting-edge development tools, provide an open platform for neurological research material, understand disease heterogeneity, and promote early detection for those affected by ALS.

ALS Information at the National Institute of Health (NIH)

Comprehensive overview of ALS provided by MedlinePlus, a service of the U.S. National Library of Medicine. Materials are also available in Spanish.

ALS Therapy Alliance

Patient portion of the ALS Therapy Alliance's website focusing on their expertise and funding to advance their studies of Amyotrophic Lateral Sclerosis.


Alzforum is a news website and information resource dedicated to helping researchers accelerate discovery and advance development of diagnostics and treatments for Alzheimer’s Disease and related disorders, such as ALS.

National Institute of Neurological Disorders and Stroke

The primary NIH organization for research on Amyotrophic Lateral Sclerosis.

National Institute of Neurological Disorders and Stroke (NINDS)

ALS Fact Sheet provided by a Research Institute of the NIH dedicated to brain and nervous system disorders.

How can I connect with others?

ALS Therapy Development Institute (TDI)

The ALS TDI’s community page includes events, an online forum, and social networking opportunities.

ALS Untangled

Scientific effort investigating alternative and off-label ALS treatments, while bringing together patients, clinicians, and scientists via Twitter, a social networking tool.

fALS Connect

fALS Connect is an online registry for people with familial ALS with the stated goal of facilitating research in ALS to develop treatments and ultimately a cure for this disease. By creating an online account, participants agree to be contacted about potential research opportunities. No identifying information is shared.


PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments.

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