Trusted Resources to Learn About ALS

The internet has a wealth of information about ALS, but it can be hard to sift through everything and separate fact from fiction. Below are some trusted websites that provide credible and reliable information about ALS.

Les Turner ALS Foundation: The Foundation provides the most comprehensive care and support to people living with ALS and their families so they can confidently navigate the disease, and advances scientific research for the prevention, treatment and cure of ALS. ALS treatment decisions can be complicated and our information guides, webinars and My ALS Decision Tool^TM can help.

ALS Association: Their mission is to discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.

ALSUntangled: Reviews alternative and off label treatments, with the goal of helping people living with ALS make more informed decisions.

ALS Therapy Development Institute (ALS TDI): A drug discovery lab focused solely on ALS and provides people living with ALS with up-to-date research information and opportunities to connect with others in the ALS community through forums, virtual town hall meetings, and podcasts.

Answer ALS: The single largest collaborative ALS research project involving over 1000 participants across 20 different institutions. The data and resources are openly shared with the global research community to focus on uncovering disease subgroups and curing ALS.

Everything ALS: Patient-led non-profit organization focused on an open data platform for direct engagement with people living with ALS, their caregivers, researchers, and drug companies.

I AM ALS: Patient-led community that provides critical support and resources to people living with ALS, their caregivers and loved ones, with emphasis on building awareness and development of a cure.

International Alliance of ALS/MND Associations: International community that focuses on the exchange of information regarding all aspects of ALS/MND including research and management of care.

Muscular Dystrophy Association (MDA): Their mission is to transform the lives of people with muscular dystrophy, ALS, and related neuromuscular diseases. Their website contains information about advocacy, clinical trials, support groups, and research.

Roon: a guide for navigating your ALS journey. A free app and website, Roon is a Q&A platform featuring experts from Northwestern, Harvard MGH, Columbia, Duke and more, as well as nonprofit/advocacy organizations, patients and caregivers. The app offers medically vetted answers to thousands of the top questions you have via short-form video content. It’s a great resource to use at any stage of the journey – users can browse existing questions or directly ask questions and have one of the experts answer. The app features answers ranging from supportive technologies and home & daily living, to clinical trials and caregiver support.

The Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS): Provides resources and education information along with information on ALS clinical trials and research.

Your ALS Guide: A comprehensive website that provides information, tips, and resources on topics ranging from newly diagnosed materials, making decisions, equipment, and much more.

Watch for Scams and False Information
Posts on social media or discussion forums may offer speculative, ill-advised medical advice or do-it-yourself medication tips that could end up being harmful to your health. If it sounds too good to be true, more than likely it is. Your ALS care team and health care providers can help you identify and assess credible information.