Amyotrophic lateral sclerosis

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ORPHA:803OMIM:617892G12.2
Who is this for?
Show terms as
6FDA treatments134Active trials246Specialists8Treatment centers16Financial resources

Where are you in your journey?

UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Amyotrophic Lateral Sclerosis is treated with 8 medications in our database, including RADICAVA, RADICAVA ORS, Edaravone, Finzala, edaravone, Riluzole, and 3 more. 7 of these have manufacturer assistance programs available to help reduce out-of-pocket costs. Medications are manufactured by Mitsubishi Tanabe, Mayne, Sanofi, Italfarmaco, Biogen and others. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Amyotrophic Lateral Sclerosis treatment below.

Also known as:

Clinical phenotype terms— hover any for plain English:

Amyotrophic lateral sclerosisHP:0007354NeurodegenerationHP:0002180Motor neuron atrophyHP:0007373
Inheritance

Variable

Can be inherited in different ways depending on the underlying gene

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗OMIM ↗NORD ↗

FDA & Trial Timeline

10 events
Oct 2026Nebulized RNS60 for the Treatment of Amyotrophic Lateral Sclerosis

Revalesio Corporation — PHASE2

TrialNOT YET RECRUITING
Jun 2026This Study Evaluates the Safety, Target Engagement, and Preliminary Efficacy of Galunisertib (TGF-βR1/ALK5 Inhibitor)Combined With Nerandomilast (PDE4 Inhibitor) in GREM2-positive ALS, a Biomarker-defined Subgroup Hypothesized to Reflect Heightened TGF-β/SMAD-driven Astrocytic and Fibrotic Signaling

Gipfel Life Sciences GmbH — PHASE2, PHASE3

TrialNOT YET RECRUITING
Jun 2026Do Video Recordings of Multidisciplinary Clinics Improve Quality of Life for People With ALS and Their Caregivers?

Trustees of Dartmouth College — NA

TrialNOT YET RECRUITING
Apr 2026Characterization of Platelet Molecular Profiles in ALS for the Identification of Specific Diagnostic Biomarkers - A Pilot Study

University Hospital, Tours

TrialNOT YET RECRUITING
Apr 2026Digital Speech Markers for Monitoring ALS in Spanish Speakers

Nova Southeastern University

TrialNOT YET RECRUITING
Apr 2026Invasive Home Ventilation in Denmark

Rigshospitalet, Denmark

TrialNOT YET RECRUITING
Apr 2026Virtual Reality for Anxiety Management in Persons With Amyotrophic Lateral Sclerosis

Horizon Health Network — NA

TrialNOT YET RECRUITING
Mar 2026A Study to Learn More About the Long-Term Safety of Tofersen (Qalsody) in Participants With Superoxide Dismutase 1 (SOD-1) Amyotrophic Lateral Sclerosis (ALS)

Biogen

TrialNOT YET RECRUITING
Mar 2026Diagnostic Accuracy of SleepImage Technology for Detecting Respiratory Failure in Patients With Amyotrophic Lateral Sclerosis

Royal Brompton & Harefield NHS Foundation Trust

TrialRECRUITING
Mar 2026Healey ALS MyMatch Common Screening Protocol

Massachusetts General Hospital

TrialNOT YET RECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

6 available

Rilutek

Riluzole· Rhone-Poulenc Rorer Pharmaceuticals, Inc.Orphan Drug

Treatment of patients with amyotrophic lateral sclerosis (ALS). Riluzole extends survival and time to tracheostomy. First drug approved for ALS (1995).

RADICAVA, RADICAVA ORS

· Mitsubishi Tanabe

* Patient Copay Amount: Pay as little as $0 per RADICAVA ORS® prescription dispense. * Maximum Annual Benefit Limit: Subject to a maximum annual benefit limit per calendar year (specific dollar amount

Finzala

norethindrone acetate and ethinyl estradiol and ferrous fumarate· Mayne

Detailed copay and financial assistance information is not publicly available for this medication at this time. Please consult your pharmacist or the manufacturer's official patient support program fo

Edaravone

Edaravone· Mitsubishi Tanabe

* Patient Copay Amount: Pay as little as $0 per prescription dispense. * Maximum Annual Benefit Limit: Subject to a maximum annual benefit limit per calendar year (Specific dollar amount Not Publicly

ZELVYSIA

SAPROPTERIN DIHYDROCHLORIDE· Pfizer

Detailed copay and financial assistance information is not publicly available for this medication at this time. Please consult your pharmacist or the manufacturer's official patient support program fo

QALSODY

tofersen· Biogen

* Patient Copay Amount: Not Publicly Available * Maximum Annual Benefit Limit: Not Publicly Available * Core Eligibility Restrictions: Not Publicly Available * RxBIN, PCN, and Group numbers: Not Publi

Clinical Trials

20 recruitingView all trials with filters →
Other20 trials
PRE-Symptomatic Studies in Amyotrophic Lateral Sclerosis
Active
· Sites: Miami, Florida · Age: 1899 yrs
Healing ALS Registry Observational Study (HAROS)
Actively Recruiting
PI: William L Cowden, MD (Chair of Scientific Board of Academy of Comprehens) · Sites: Park City, Utah · Age: 18110 yrs
The Pre-symptomatic Familial Amyotrophic Lateral Sclerosis (Pre-fALS) Study
Actively Recruiting
PI: Michael G Benatar, MD, PhD. (University of Miami) · Sites: Miami, Florida · Age: 1899 yrs
Obi Medical Robot: Evaluating Effectiveness Related to Usability
Active
· Sites: Jacksonville, Florida · Age: 599 yrs
Target ALS Biomarker Study; Longitudinal Biofluids, Clinical Measures, and At Home Measures
Actively Recruiting
PI: Laura Dugom, MPH (Target ALS Foundation, Inc.) · Sites: Phoenix, Arizona; San Diego, California +10 more · Age: 1899 yrs
Comprehensive Analysis Platform To Understand, Remedy and Eliminate ALS
Actively Recruiting
PI: Sanjay Kalra, MD (University of Alberta) · Sites: Edmonton, Alberta; Toronto, Ontario +2 more · Age: 1899 yrs
Validation of the French Version of the Primary Lateral Sclerosis Functioning Rating Scale (PLSFRS)
Actively Recruiting
PI: Philippe CORCIA, PR (University Hospital, Tours) · Sites: Brest; Clermont-Ferrand +5 more · Age: 1899 yrs
ALS Research Collaborative
Actively Recruiting
PI: Fernando G Vieira, M.D. (ALS Therapy Development Institute) · Sites: Watertown, Massachusetts · Age: 1899 yrs
Remote Speech and Swallowing Assessment in ALS
Active
PI: Andrew Geronimo, PhD (Penn State College of Medicine) · Sites: Hershey, Pennsylvania · Age: 1899 yrs
Optimizing INITIation of Non-invasive Ventilation in ALS Patients
Actively Recruiting
· Sites: Groningen · Age: 1899 yrs
Impact of Physical Functioning on Patient-Reported Outcomes in ALS Patients at TidalHealth
Actively Recruiting
· Sites: Salisbury, Maryland · Age: 1899 yrs
Development of Targeted RNA-Seq for Amyotrophic Lateral Sclerosis Diagnosis
Actively Recruiting
PI: Claire Guissart (CHU de Nimes) · Sites: Bordeaux; Clermont-Ferrand +5 more · Age: 1899 yrs
Emotion Processing Among Patients With ALS
Actively Recruiting
PI: Mia B Heintzelmann, Cand.med (Department of Neurology, Aarhus University Hospita) · Sites: Aarhus, Central Jutland; Aalborg, Region Nordjulland · Age: 1899 yrs
Derivation of Induced Pluripotent Stem Cells From an Existing Collection of Human Somatic Cells
Actively Recruiting
PI: Benjamin E Reubinoff, MD PhD (Chairman of Department of Obstetrics & Gynecology/) · Sites: Jerusalem; Jerusalem · Age: 1899 yrs
Biomarkers in Different Types of Amyotrophic Lateral Sclerosis (ALS) Patients Being Treated With Edaravone
Actively Recruiting
PI: Jeffrey Rosenfeld, PhD, MD (Loma Linda University) · Sites: Loma Linda, California · Age: 1885 yrs
ALS Diagnosis From a Saliva Sample: a Non-coding RNA Analysis Approach
Active
· Sites: Strasbourg, Alsace; Saint-Herblain, Loire-Atlantique +17 more · Age: 1899 yrs
Dysphagia, QoL and Attitudes Towards PEG in ALS Patients
Actively Recruiting
PI: Blaž Koritnik, MD, PhD (University Medical Centre Ljubljana) · Sites: Ljubljana · Age: 1899 yrs
Diagnostic Accuracy of SleepImage Technology for Detecting Respiratory Failure in Patients With Amyotrophic Lateral Sclerosis
Actively Recruiting
· Sites: London · Age: 1899 yrs
Hereditary Spastic Paraplegia Genomic Sequencing Initiative (HSPseq)
Actively Recruiting
PI: Darius Ebrahimi-Fakhari, MD, PhD (Boston Children's Hospital) · Sites: Boston, Massachusetts · Age: 030 yrs
Natural History and Clinical Features of Amyotrophic Lateral Sclerosis (ALS)
Actively Recruiting
PI: Dongsheng Fan, MD.PHD (Peking University Third Hospital) · Sites: Beijing

Specialists

Showing 25 of 246View all specialists →
AP
Andrew Geronimo, PhD
Hershey, Pennsylvania
Specialist

Rare Disease Specialist

PI on 2 active trials
TP
Timothy M Miller, MD, PhD
Specialist
PI on 2 active trials
JP
Junwei Hao, MD; PhD
Beijing, Beijing Municipality
Specialist

Rare Disease Specialist

EM
Eugenio Mercuri, MD
Genova
Specialist

Rare Disease Specialist

PI on 3 active trials
AM
Alberto Benussi, MD
Trieste, Trieste
Specialist

Rare Disease Specialist

PI on 5 active trials
UD
Urielle Desalbres
Specialist
PI on 21 active trials1 Amyotrophic lateral sclerosis publication
DM
Daniel Fowler, M.D.
Boston, Massachusetts
Specialist

Rare Disease Specialist

PI on 2 active trials
GM
Giancarlo Comi, MD
Specialist
PI on 3 active trials1 Amyotrophic lateral sclerosis publication
JP
Jeremy Shefner, MD, PhD
PHOENIX, AZ
Specialist
PI on 3 active trials
RG
Rebecca Gibson
Specialist
PI on 6 active trials13 Amyotrophic lateral sclerosis publications
JM
Jakub M Antczak, MD
Krakow, Lesser Poland Voivodeship
Specialist

Rare Disease Specialist

PI on 3 active trials
PM
Petra Kaufmann, MD
NEW YORK, NY
Specialist
PI on 2 active trials
KM
Kathryn J Swoboda, MD
SACRAMENTO, CA
Specialist
PI on 2 active trials
SY
Shan Ye
SAN FRANCISCO, CA
Specialist
PI on 2 active trials
MM
Maja Kojović, PhD, MD
Specialist
PI on 2 active trials
GM
General Manager
Specialist
PI on 14 active trials6 Amyotrophic lateral sclerosis publications
YM
Yilong Wang, MD,PhD
Specialist
PI on 3 active trials
JE
Jacqueline Montes, Pt, EdD
New York, New York
Specialist

Rare Disease Specialist

PI on 5 active trials
TM
Todd D Levine, MD
Specialist
PI on 3 active trials
JM
Jeffrey Statland, MD
KANSAS CITY, KS
Specialist
PI on 7 active trials

Treatment Centers

8 centers
⚗️ Trial Site

Massachusetts General Hospital

📍 Boston, Massachusetts

👤 Matthew Frigault, MD

👤 Janssen Research & Development, LLC Clinical Trial

⚗️ Trial Site

Northwestern University

📍 Chicago, Illinois

👤 Ann (Annie) W Silk

⚗️ Trial Site

University of Michigan

📍 Ann Arbor, Michigan

👤 Janssen Research & Development, LLC Clinicaltrial

⚗️ Trial Site

University of Minnesota

📍 Minneapolis, Minnesota

⚗️ Trial Site

Washington University

📍 St Louis, Missouri

👤 Sawa M Ito, MD, PhD

👤 Anthony A. Amato, MD

⚗️ Trial Site

Mayo Clinic

📍 Jacksonville, Florida

⚗️ Trial Site

University of California San Diego

📍 La Jolla, California

⚗️ Trial Site

Indiana University

📍 Indianapolis, Indiana

Financial Resources

6 resources

The Assistance Fund — Amyotrophic lateral sclerosis

The Assistance Fund

Amyotrophic lateral sclerosis

Verified 3d ago
Foundation Grant
foundation grant
Accepting applications

HealthWell Foundation — Amyotrophic lateral sclerosis

HealthWell Foundation

Amyotrophic lateral sclerosis

Verified 3d ago
Foundation Grant
foundation grant
Accepting applications

PAN Foundation — Amyotrophic lateral sclerosis

PAN Foundation

Amyotrophic lateral sclerosis

Verified 3d ago
Foundation Grant
foundation grant
Accepting applications

Good Days — Amyotrophic lateral sclerosis

Good Days

Amyotrophic lateral sclerosis

Verified 3d ago
Foundation Grant
foundation grant
Accepting applications

NORD Patient Assistance — Amyotrophic lateral sclerosis

NORD Patient Assistance

Amyotrophic lateral sclerosis

Verified 3d ago
Foundation Grant
foundation grant
Accepting applications

Patient Advocate Foundation — Amyotrophic lateral sclerosis

Patient Advocate Foundation

Amyotrophic lateral sclerosis

Verified 3d ago
Foundation Grant
foundation grant
Accepting applications

10 travel grants are also available for Amyotrophic lateral sclerosis patients — see Travel Grants below ↓

Travel Grants

10 grants

Ipsen Cares Patient Assistance Program

Apply ↗

RADICAVA ORS (edaravone) VA Financial Assistance and Support

Mitsubishi Tanabe Pharma America

Apply ↗

Pfizer Patient Assistance Program

Pfizer

Apply ↗

Pfizer enCompass Reimbursement Support and Patient Support

Pfizer

Apply ↗

Pfizer Patient Assistance Program

Pfizer

Apply ↗

Pfizer Patient Assistance Program

Pfizer

Apply ↗

Pfizer RxPathways Support Hub Programs

Pfizer

Eligibility requires patients to be prescribed a supported Pfizer medication and meet financial criteria ranging from 300% to 500% of the Federal Poverty Level depending on the drug. The programs primarily assist uninsured or underinsured individuals with access to medicine through co-pay savings and patient assistance initiatives.

Apply ↗

MTPA Patient Assistance Program

Apply ↗

Pfizer enCompass Co-Pay Assistance Program

Pfizer

Apply ↗

Pfizer Dermatology Patient Access Financial Support

Pfizer

Patients must be residents of the United States or Puerto Rico and possess commercial insurance to qualify for copay savings cards. Uninsured patients or those with government insurance may be evaluated for the Pfizer Patient Assistance Program based on income, household size, and specific medicine prescribed.

Apply ↗Up to $15,000

Community

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Latest news about Amyotrophic lateral sclerosis

5 articles
GrantRSSApr 24, 2026
MDA Wings Over Wall Street gala returns to fund critical ALS research
The Muscular Dystrophy Association is holding its 26th annual fundraising gala in New York City on June 4 to raise money for ALS research. The event brings toge
AdvocacyRSSApr 24, 2026
My principles for finding and giving support in the ALS community
A caregiver shares her experience of learning to navigate life after her husband was diagnosed with ALS in 2018. She describes how she went from knowing almost
ResearchRSSApr 23, 2026
Keeping weight steady after tube feeding may help ALS survival
A study of 121 people with ALS found that those who kept their weight more stable after starting tube feeding lived longer. This was true even if they weren't e
NewsRSSApr 23, 2026
My husband doesn’t get out much, but he enjoys following Comet’s secret life
This is a personal story about a man with ALS (a disease that affects nerve cells and causes muscle weakness) and how his dog Comet has become an important part
Clinical trialRSSApr 22, 2026
5-year survival seen for over 40% of ALS patients on masitinib in trial
A new drug called masitinib helped ALS patients live longer than expected. In a clinical trial, over 40% of patients treated with masitinib survived for at leas
See all news about Amyotrophic lateral sclerosis

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Common questions about Amyotrophic lateral sclerosis

What is Amyotrophic lateral sclerosis?

Amyotrophic Lateral Sclerosis is treated with 8 medications in our database, including RADICAVA, RADICAVA ORS, Edaravone, Finzala, edaravone, Riluzole, and 3 more. 7 of these have manufacturer assistance programs available to help reduce out-of-pocket costs. Medications are manufactured by Mitsubishi Tanabe, Mayne, Sanofi, Italfarmaco, Biogen and others. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Amyotrophic Lateral Sclerosis treatment below.

At what age does Amyotrophic lateral sclerosis typically begin?

Typical onset of Amyotrophic lateral sclerosis is adult. Age of onset can vary across affected individuals.

Are there clinical trials for Amyotrophic lateral sclerosis?

Yes — 20 recruiting clinical trials are currently listed for Amyotrophic lateral sclerosis on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Amyotrophic lateral sclerosis?

25 specialists and care centers treating Amyotrophic lateral sclerosis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.

What treatment and support options exist for Amyotrophic lateral sclerosis?

7 FDA-approved treatments and 9 patient support programs are currently tracked on UniteRare for Amyotrophic lateral sclerosis. See the treatments and support programs sections for copay assistance, eligibility, and contact details.