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Amyotrophic Lateral Sclerosis Hub

Trusted care. Latest research. Community. Everything ALS in one place.

πŸ¦“ Rare disease 🧬 Genetic ● Rare disease awareness
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New Amyotrophic Lateral Sclerosis research indexed on PubMed  Β·  Recruiting trials on ClinicalTrials.gov  Β·  Find a Amyotrophic Lateral Sclerosis specialist near you  Β·  Amyotrophic Lateral Sclerosis community & caregiver support  Β·  CFRD screening reminder  Β· 
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Medical Overview of Amyotrophic Lateral Sclerosis

Sources cited

A rare neurodegenerative disease characterized by progressive muscular paralysis reflecting degeneration of motor neurons in the primary motor cortex, corticospinal tracts, brainstem and spinal cord.

State of Disease · Prevalence / incidence
1-9 / 100 000 — Point prevalence · Europe (Validated)
Source: 19192301 — via Orphanet (orphadata.com), CC-BY 4.0 · cited, never invented.
Gene / DefectLRP12, CHMP2B, SOD1, VAPB
InheritanceAutosomal dominant / Autosomal recessive / Multigenic/multifactorial / X-linked dominant
Hallmark SymptomsGeneralized muscle weakness, Motor neuron atrophy, Neurodegeneration, Abnormality on pulmonary function testing, Anxiety, Atypical behavior, Babinski sign, Cognitive impairment
Also known as: ALS, Charcot disease, Lou Gehrig disease
Classification & codes: GARD 0005786 · Orphanet ORPHA:803 · OMIM 105400 · ICD-10 G12.2

Sources: GARD (NIH/NCATS), Orphanet Β· last reviewed 2026. Educational only β€” not medical advice.

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News & Updates
For you
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News & Developments
Live sources
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Treatments
Current options

News & Updates

New in Amyotrophic Lateral Sclerosis research Β· 2026

ALYFTREK shows positive Phase 3 results in children ages 2–5

Vertex plans global regulatory submissions for this pediatric age group in the first half of 2026.

Real, verifiedPediatric
Source: Vertex Pharmaceuticals newsroom · linked
View article β†’
Community Discussion Β· in Parent Caregivers Β· 4 hours ago

Airway clearance routines that actually work for teens

πŸ’¬ 142 replies❀ 87 likes
Join the discussion β†’
Clinical Trial Match Β· Recommended for you

3 open trials match this profile

Locations in NC, FL and GA.

GeneticModulatorAges 12+
Source: ClinicalTrials.gov · linked
View matches β†’
Upcoming Event Β· sample

Amyotrophic Lateral Sclerosis Family Conference

Illustrative example event Β· location TBD

Register β†’
Featured Education Β· Tomeko Grand Rounds

Care & management overview — Amyotrophic Lateral Sclerosis

Educational programming; see the cited sources on this hub.

Sample session · illustrative
Watch β†’

Amyotrophic Lateral Sclerosis News & Developments

The latest Amyotrophic Lateral Sclerosis research, news and registered trials — live from public sources. Each link opens the source directly; nothing here is auto-summarized or invented.

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Clinical Trials
Live search
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Find a Specialist
Near you
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Visit Questions
Prep for your visit
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Hospital Directory
By faculty
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Plain-language Tools
Translate jargon
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Mental Health Toolkit
Advisory Board vetted
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504 / IEP Checklist
For school meetings
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Research Matching
Find collaborators

Recruiting trials

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Loading recruiting ALS trials…Live from ClinicalTrials.gov

Find a Amyotrophic Lateral Sclerosis Specialist Near You

Sample results β€” illustrative only. A real version would search the NPPES provider registry and CFF-certified centers by actual distance from your ZIP.

Specialists Who Treat Amyotrophic Lateral Sclerosis

497
Verified specialists across the fields that manage Amyotrophic Lateral Sclerosis — genetics, nephrology, cardiology, neurology and more. Each is confirmed to prescribe an FDA-approved Amyotrophic Lateral Sclerosis therapy from public CMS records, and each links to their Tomeko listing. No patient data.
Color code: verified treater  ·  also publishes on Amyotrophic Lateral Sclerosis
Showing 6 of 497 verified specialists across these fields. See the full directory →
How we validate: confirmed treaters from public CMS prescribing records + specialty and location from the NPPES provider registry; a “Publishes on Amyotrophic Lateral Sclerosis” chip means the clinician also appears in PubMed for this condition. A public-data signal, not an endorsement — confirm any clinician is accepting patients.

Treatment & Daily Living

Medical care plus the everyday therapies and supports relevant to Amyotrophic Lateral Sclerosis. Treatment is individualized — ask your specialist about the medications, procedures and therapies. Browse medications →

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Physical therapyStrength, mobility and function.
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Occupational therapyDaily-living skills and adaptive strategies.
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Assistive technologyDevices and tools that support independence.
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Mental healthCoping support for patients and families.
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School & workAccommodations, IEP / 504 and workplace support.
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Caregiver & respiteSupport and rest for the people doing the caring.

Media Center

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News, podcasts, books & research for Amyotrophic Lateral Sclerosis — real coverage, links out, never re-hosted.

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NewsLatest coverage.
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PodcastsEpisodes & shows.
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BooksBooks & memoirs.
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ResearchNewest papers (PubMed).

Audience Guides

Plain-language guidance for the people around someone with Amyotrophic Lateral Sclerosis — how to understand it and talk about it. AI-generated for communication, not medical advice; always confirm specifics with a clinician.

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TeacherA student may need accommodations — rest breaks, bathroom access, flexible deadlines, or a place for medication. Keep the care plan handy, know the warning signs, and treat the student as capable — most want to be included, not singled out.
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CoachAsk the family what activity is safe and what to watch for. Have an emergency plan and the family's contacts on hand. Build in rest and hydration, and adapt drills so they can take part.
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Employer / managerFocus on what helps them do the job — flexible hours, remote options, accessible space, and time for appointments. Keep health details private and let them lead on what they share.
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School nurseGet the care plan and medication orders on file, know the emergency steps and who to call, and coordinate quietly with teachers so the student is supported without being singled out.
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Family & friendsLearn the basics, ask how you can help rather than assuming, and offer specific support — a meal, a ride, or just listening. Small, steady help matters more than grand gestures.

Companies Developing Treatments

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Biopharma companies with registered trials for Amyotrophic Lateral Sclerosis — from ClinicalTrials.gov. Informational, not an endorsement, and not every program is in trials.

IndustryBiogen11 registered trials for Amyotrophic Lateral Sclerosis
IndustryShionogi10 registered trials for Amyotrophic Lateral Sclerosis
IndustryKnopp Biosciences9 registered trials for Amyotrophic Lateral Sclerosis
IndustryCytokinetics9 registered trials for Amyotrophic Lateral Sclerosis
IndustryAmylyx Pharmaceuticals Inc.8 registered trials for Amyotrophic Lateral Sclerosis
IndustryBrainstorm-Cell Therapeutics6 registered trials for Amyotrophic Lateral Sclerosis
IndustryNeuralink Corp6 registered trials for Amyotrophic Lateral Sclerosis
IndustrySanofi6 registered trials for Amyotrophic Lateral Sclerosis
IndustryClene Nanomedicine5 registered trials for Amyotrophic Lateral Sclerosis
Full biopharma directory (ClinicalTrials.gov) →
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Questions For Your Next Visit

Print

Preferences only β€” saved to your account, never shared or sold. No PHI. Sources: GARD (NIH/NCATS), Orphanet.

Tools

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Amyotrophic Lateral Sclerosis Care Directoryfrom CFRI faculty

Every institution behind the faculty, with their affiliated experts.

Researchers Publishing on Amyotrophic Lateral Sclerosis

20
People who publish research on Amyotrophic Lateral Sclerosis, ordered by number of articles — a research-activity signal. This is not a directory of treating clinicians; to find a doctor who treats Amyotrophic Lateral Sclerosis near you, use the Find a Specialist Near You finder above. Each links to their Tomeko researcher profile.
Ordered by number of published articles on this condition — a public-data count from PubMed records (NIH/NLM). A signal of research activity, not a Tomeko ranking or endorsement.

Mental Health Toolkit

Sources cited

Coping strategies, how to find a a specialist therapist, and mental-health resources built for the ups and downs of living with Amyotrophic Lateral Sclerosis β€” for patients and caregivers alike.

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504 & IEP Accommodations Checklist

Print

Preferences only β€” saved to your account, never shared or sold. No PHI. Sources: GARD (NIH/NCATS), Orphanet.

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Grand Rounds
Accredited education
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Centers of Excellence
CFF network
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Nonprofits & Foundations
Who to know
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Grants & Financial Help
Cost assistance

Grand Rounds & Accredited Education

CFRI 2026 program
Amyotrophic Lateral Sclerosis Pharmaceutical Issues β€” Drug-Drug Interactions and BeyondJake Brockmeyer, PharmD
Grand Rounds & CME — Amyotrophic Lateral SclerosisManu Jain, MD
Clinical management — Amyotrophic Lateral SclerosisKevin Scully, MB BCh BAO
Multidisciplinary care — Amyotrophic Lateral SclerosisSigrid Barrett, PhD, RN
Panel: Impacts of Aging with Amyotrophic Lateral SclerosisUluer Β· Desch Β· Brace Β· Mentch
The Bloom Effect: How Resilience Transforms UsKimberly Morse, MSW, LCSW
Amyotrophic Lateral Sclerosis in the Context of the ExposomeGabriela Oates, PhD
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Open Questions
Ask & answer
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Survey
2–3 min
πŸ‘₯
Support Groups
Find your people

Anyone can ask. Sign in to answer. Peer support — not medical advice, and no PHI.

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What do you wish you had known earlier?
3 answers Β· 12 following
Answer β†’
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What has helped you most in managing day to day?
5 answers Β· 8 following
Answer β†’

Survey

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Take a Patient Survey2–3 min Β· optional

Reflect on how you are doing β€” anonymous, with only de-identified group averages shown.

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Certified Centers of Excellence

CFF network

Care centers and specialists for Amyotrophic Lateral Sclerosis, from Tomeko’s verified provider directory (CMS NPPES).

Boston Children's HospitalBoston, MA
Children's Hospital of PhiladelphiaPhiladelphia, PA
Cincinnati Children's HospitalCincinnati, OH
Stanford / Lucile Packard Children'sPalo Alto, CA
Johns HopkinsBaltimore, MD
Texas Children's HospitalHouston, TX

Representative CFF centers β€” the official CFF directory has the complete, current list.

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Nonprofits & Foundations

Grants & Financial Help

Financial Guidance CompassFree, personalized care-coordination and financial-guidance service for people with ALS and their families.
HealthWell FoundationCopay and insurance-premium assistance for Amyotrophic Lateral Sclerosis treatments.
Patient Access Network FoundationHelps cover out-of-pocket costs for Amyotrophic Lateral Sclerosis medications.

Representative programs β€” illustrative only. Eligibility and availability vary; not a guarantee of assistance.

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State of the Disease
2026 report
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Getting Started Pack
PDF guide
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Daily Management Guide
PDF Β· illustrated
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College & Career Planning
PDF guide

Patient & Family Guides

Sources cited
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2026 State of the Disease ReportPDF Β· updated 2026

An annual snapshot of Amyotrophic Lateral Sclerosis research, treatment access and outcomes, written in plain language for patients and families.

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Getting Started PackPDF guide

Practical starting points and things to plan for in the first year after diagnosis.

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Daily Management GuidePDF Β· illustrated

Step-by-step guidance, what to expect, and a sample daily routine.

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College & Career PlanningPDF guide

Disclosure, accommodations, insurance transitions and workplace planning for teens and young adults with ALS.

Sources: GARD (NIH/NCATS), Orphanet Β· last reviewed 2026. Educational only β€” not medical advice.

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