Trial News & Events

Report Urges Immediate and Longer-Term Actions to Improve Quality of Health Care and Support Services for People with ALS, Speed Development of Therapies

A new congressionally mandated report from the National Academies of Sciences, Engineering, and Medicine recommends actions Congress, federal agencies, insurers, and others should take to strengthen health care and support services for people with amyotrophic lateral sclerosis (ALS) and accelerate research on therapies for the disease — with the goal of turning ALS into a livable disease within a decade.

Les Turner ALS Foundation Releases Step-by-Step Patient Guide to Increase and Diversify Clinical Trial Participation

The Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital and Rapa Therapeutics have announced the first participant enrolled in the Expanded Access to RAPA-501 Protocol (EAP)

The Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital and Rapa Therapeutics have announced the first participant enrolled in the Expanded Access to RAPA-501 Protocol (EAP). This EAP is sponsored by the National Institutes of Health (NIH) - Neurological Disorders and Stroke (NINDS), as part of the U.S. government’s landmark Accelerating Access to Critical Therapies for ALS Act (ACT for ALS).

The Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital and Rapa Therapeutics have announced the first participant enrolled in the Expanded Access to RAPA-501 Protocol (EAP

The Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital and Rapa Therapeutics have announced the first participant enrolled in the Expanded Access to RAPA-501 Protocol (EAP). This EAP is sponsored by the National Institutes of Health (NIH) - Neurological Disorders and Stroke (NINDS), as part of the U.S. government’s landmark Accelerating Access to Critical Therapies for ALS Act (ACT for ALS).

The Sean M. Healey & AMG Center for ALS and Prilenia Therapeutics Announce First Participant Enrolled in NIH-Sponsored ACT for ALS Expanded Access Protocol for Pridopidine

Amylyx Pharmaceuticals Announces Formal Intention to Remove RELYVRIO®/ALBRIOZA™ from the Market; Provides Updates on Access to Therapy, Pipeline, Corporate Restructuring, and Strategy

Clene Reports Significant Survival Benefit With CNM-Au8® Treatment in ALS EAP Compassionate Use Programs

Clene Nanomedicine, Inc. reported new, significant survival results from two independent analyses of the pooled data from the intermediate-size EAPs supported by Clene.

Transposon Announces Interim Results from a Phase 2 Study of TPN-101 for the Treatment of C9orf72-Related ALS

TPN-101 showed a clinical effect on Vital Capacity, an objective respiratory measure that correlates with mortality in patients with ALS

National Institutes of Health (NIH) funds New Multi-Institutional ALS Clinical Research Consortium

The NIH has established a transformative national ALS clinical research consortium called Access for All in ALS (ALL ALS). This new consortium is a multi-institutional effort and aims to disrupt the ALS clinical research landscape in the U.S.

"FDA Grants Accelerated Approval for QALSODY™ (tofersen) for SOD1-ALS, a Major Scientific Advancement as the First Treatment to Target a Genetic Cause of ALS," published by Biogen

QALSODY is the first approved treatment to target a genetic cause of ALS.