Organizations that Support ALS Patients and Caregivers

Print
Related Pages

National ALS Registry Partners:

  • ALS Association: the largest, national non-profit organization dedicated to ALS by providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers.
  • ALS Network: Serving the nation’s largest local ALS community via a suite of comprehensive services including equipment loans, clinics, research navigation, benefits assistance, advocacy, events, and connection groups for all – caregivers, Spanish speakers, LGBTQIA+, veterans, and more.
  • Team Gleason: Team Gleason is the leading provider of technology and equipment to the ALS community across the United States, delivering a robust Voice Preservation program. Visit our website to begin preserving your voice for free.
  • MDA ALS: supports muscular dystrophy and related life-threatening diseases such as ALS through its national network of clinics.
  • Les Turner ALS Foundation: provides comprehensive ALS care and support services in the Chicagoland area and at Northwestern Medicine.
  • Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS): supports ALS research and clinical trials through its network of ALS partners.
  • National Institutes of Health (NIH): National Institute of Aging (NIA) partners with the Registry to provide research support in the area of genetic analyses of specimens from the National ALS Biorepository.
  • Canadian Neuromuscular Disease Registry (CNDR): The CNDR is a national patient registry collecting clinical information in 36 neuromuscular and 14 ALS clinics across Canada with the goal of impacting quality of care and access to appropriate therapies.
  • CReATe: goal of the Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Consortium is to advance therapeutic development for sporadic and familial forms of amyotrophic lateral sclerosis (ALS).

ALS Informational Sites:

  • ALS Clinical Trials: find ALS clinical trials approved by the Food and Drug Administration (FDA).
  • I AM ALS: patient-led community that provides critical support and resources to patients, caregivers and loved ones.
  • EverythingALS: is a citizen led nonprofit research organization dedicated to changing the paradigm for ALS, working towards “Care to Cure” by leveraging technology, creating an ecosystem and open innovation, paying tribute to the entire ALS community.