Mass General offers links to other useful resources.

ALS Information

MGH ALS Multidisciplinary Clinic

This is our clinic’s website that was developed in the hope of helping you to understand what ALS is, how it is diagnosed, what research is being done to understand ALS and develop better treatments, and how we at Mass General address some of the important issues that are related to the disease.

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.

Muscular Dystrophy Association (MDA)

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


***To register, sign a registration paper at clinic with your nurse or MDA representative.***

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.

Massachusetts Chapter

*** To register, e-mail or call 888-CURE-ALS and ask to register***

Compassionate Care ALS

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

*** To register, e-mail or call 508-444-6775 and ask to register***

National ALS Registry

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

***To register, go to website, click on “Create Account” and follow the instructions.***


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.

ALS Charitable Foundation

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

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 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.

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.

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.


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.

Connect with Others

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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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.

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