Resource library
Trusted places to go next
Official provider pages, public agencies, established ALS organizations and the official trial registry. Descriptions summarize what each source offers; inclusion is not a ranking or endorsement.
Grants directoryMoney you apply for
Services & benefitsLoans, benefits and free help
Clinical studiesThe registry, made readable
Get ready to applyDocuments and trackers
Understanding ALS
Introductory information and questions for your care team.
- Mayo Clinic — ALS symptoms and causes ↗
- Mayo Clinic — diagnosis and treatment ↗
- Your ALS Guide ↗Clear educational resources for people living with ALS and their families.Your ALS Guide
- ALS Association — genetic counseling and testing ↗
- My ALS Journey™ ↗A personalized tool for planning questions and next steps across the ALS journey.ALS Association
- I AM ALS — ALS Support Team ↗Free one-to-one navigation, peer support, and practical resource connections across the United States.I AM ALS
Care & treatment
Clinical care, medication information, and support finding a care team.
- ALS clinic directory ↗United StatesALS Association
- ALS Association — medications for treating ALS ↗Treatment information to discuss with your clinician.ALS Association
- ALSUntangled — completed reviews ↗Evidence and risks for alternative and off-label treatments.ALSUntangled
- MDA — care services ↗United States
- VA — ALS System of Care ↗For eligible U.S. veterans.
- ALS Association — programs and services ↗Care services, support groups, mobility help, benefits navigation, and planning tools.
- I AM ALS — ALS Support Team ↗Free personalized help finding care, equipment, financial resources, and peer support.I AM ALS
- MDA Resource Center ↗One-to-one U.S. support, referrals, care-center information, and trial resources.Muscular Dystrophy Association
- MDA Care Center Network ↗Find multidisciplinary neuromuscular care in the United States.Muscular Dystrophy Association
Daily living & equipment
Practical guides for home, mobility, communication and assistive technology.
- Your ALS Guide — home and daily living ↗Practical information for everyday life and caregiving at home.Your ALS Guide
- ALS Association — assistive technology ↗
- Speech and communication solutions ↗PDF guideALS Association
- Team Gleason — technology and equipment ↗Learn about ALS equipment and communication support.Team Gleason
- Compassionate Care ALS — phone accessibility ↗Explore alternatives to touch controls and accessibility features.Compassionate Care ALS
- Bridging Voice — free communication support ↗Remote help with voice preservation, AAC, eye gaze, alternate access, setup, and training.Bridging Voice
- ALS Association — emergency and medical information materials ↗Fillable hospital packet, wallet card, communication sign, and emergency tools.ALS Association
- MDA — durable medical equipment grant ↗Current documentation, covered items, and preapproval rules for the U.S. equipment grant.Muscular Dystrophy Association
- ALS Association — Independence & Mobility Program ↗Equipment, home access, and mobility support; availability varies by location and inventory.
Caregivers & families
Practical caregiving information, respite, and programs for children and families.
- ALS Association — caregiver resources ↗Explore courses, guides, and resources for caring for someone with ALS.ALS Association
- Your ALS Guide — caregiving at home ↗Practical information for everyday life and caregiving at home.Your ALS Guide
- Hope Loves Company — family programs ↗
- ALS Ride For Life — caregiver grant ↗Nationwide U.S.; current round open through October 15, 2026.
- I AM ALS — ALS Support Team ↗Personal navigation and peer support for people with ALS, caregivers, and family members.I AM ALS
- Family Caregiver Alliance — ALS caregiver guide ↗Practical help with home care, respite, family conversations, and caregiver well-being.Family Caregiver Alliance
- Live Like Lou — Connect & Serve ↗North American volunteers for short-term home projects and seasonal help.Live Like Lou
- Administration for Community Living — find local help ↗U.S. connections to transportation, meals, home care, legal help, and respite.
Treatment evidence & research
Understand what has been studied, what the evidence says, and how to take part.
- ALSUntangled — completed treatment reviews ↗Reviews of alternative and off-label treatments, including evidence and risks.ALSUntangled
- ALSUntangled — how the evidence is graded ↗Understand its evidence categories and the limits of the findings.ALSUntangled
- ALS Association — ALS medications ↗Information about medication options; distinct from alternative-treatment reviews.ALS Association
- NIH / NINDS — ALS research ↗Learn about NIH research into ALS.NIH / NINDS
- ALS TDI — Guided Trial Finder ↗Build a possible trial list, then confirm full eligibility with the study team and your clinician.ALS Therapy Development Institute
- ALL ALS — research participation ↗NIH-funded natural-history research for people living with ALS and people at genetic risk.ALL ALS
- National ALS Registry — join and receive research notifications ↗For people diagnosed with ALS in the United States.CDC
- ALS Research Collaborative ↗Observational research with remote participation options; it does not provide treatment or medical advice.ALS Therapy Development Institute
- ALS Focus surveys ↗Share the priorities and experiences of people with ALS and caregivers.ALS Association
- Biological sample and tissue donation information ↗Learn about current sample studies and the separate advance planning required for postmortem donation.ALS Association
ALS TDI resources
- ALS TDI — Let Us Help ↗Connect with ALS TDI staff about research, clinical trials, resources, or questions about ALS.
- ALS Trial Navigator ↗Free trial-search tools from ALS TDI and NEALS, with guided questions, filters, and a global map.
- Guided Trial Finder ↗Answer questions to explore trials that may fit your circumstances and preferences.ALS Therapy Development Institute
- ALS Trial Map ↗Explore research locations visually on a worldwide trial map.
- ALS Trial Browser ↗Browse trial listings and narrow results using search filters.
- ALS Research Collaborative (ARC) ↗Contribute research data from home through an observational study for people with ALS and asymptomatic gene carriers.ALS Therapy Development Institute
- ALS Town Halls ↗Virtual expert discussions with community questions and links to past sessions.
- Endpoints Podcast ↗Short conversations about research, trials, and experiences from people affected by ALS.
- ALS TDI Forum ↗Community discussions about ALS experiences and research. Posts are personal opinions, not verified treatment advice.
- ALS TDI Summit ↗Free annual research conference for people with ALS, caregivers, families, and scientists.
- ALS TDI Upcoming Events ↗Find educational gatherings and community fundraising events.
- ALS TDI News & Insights ↗Follow research updates, explanations, and community stories.
- Support ALS TDI Research ↗Explore fundraising, events, awareness activities, and other ways to support research.
Community & connection
Places for people living with ALS, caregivers and families to talk, ask questions and share experiences. Posts are peer discussion, not medical advice.
- Reddit — r/ALS ↗Peer discussion for the ALS community. Read the posting rules; this is not a forum for obtaining a diagnosis.Public forum · ALS community · Account needed to post
- ALS Forums — support community ↗Discussion areas for people living with ALS/MND, families, and caregivers.Discussion forum · ALS/MND and caregivers · Check account and privacy rules
- ALS TDI Forums ↗Community conversations about ALS, research, treatments, and lived experience. Hosted by ALS TDI; posts are peer discussion.Discussion forum · ALS and research · Check account and privacy rules
- MND Association — online forum ↗A UK-based MND community for shared experiences and support.Discussion forum · UK MND community · Check access and posting rules
- I AM ALS — Facebook group directory ↗Find communities with different interests and membership criteria. Facebook sign-in or group approval may be needed.Group directory · Facebook account generally needed · Privacy and approval vary
- Reddit — r/CaregiverSupport ↗Peer support for caregivers across many conditions; not ALS-specific.Public forum · Caregivers across conditions · Account needed to post
- ALS Forums — caregiver discussions ↗Choose “Support for caregivers (CALS)” in the forum directory.Discussion forum · ALS/MND and caregivers · Check account and privacy rules
- I AM ALS — caregiver Facebook communities ↗Includes caregiver-focused communities; check each group’s rules.Group directory · Facebook account generally needed · Privacy and approval vary
- ALS Association — local and virtual groups ↗Filter by audience and U.S. state; check current meeting details.Scheduled meetings · Local and virtual · Registration and audience vary
Choose your path
Ways to make a difference
Your time, voice, lived experience and practical help can all matter. Organizations are presented by purpose, not ranked.
Help an ALS family
Offer time for a one-time home project, explore equipment donation, or support organizations that fund day-to-day care.
- Live Like Lou — volunteer for a home project ↗Connect & Serve matches North American families with volunteers for practical short-term help.
- ALS Association — equipment and mobility support ↗Ask whether usable equipment can be accepted; condition, age, location, and current inventory matter.
- Pete Frates ALS Foundation — support family care ↗Supports its work helping families with home health and caregiving costs.
Advocate for change
Contact lawmakers, respond to current action alerts, and share lived experience on access, research, and care.
- ALS Advocacy Action Center ↗Current policy actions and tools for contacting elected officials.
- ALS Focus surveys ↗People with ALS and caregivers can share priorities and experiences that inform advocacy and research.
Participate in research
Participation can include surveys, registries, natural-history studies, sample donation, or a clinical trial. Each has its own consent and eligibility rules.
- Join the National ALS Registry ↗For diagnosed people in the United States; includes surveys and optional research notifications.
- ALS Research Collaborative ↗Observational research with remote participation options for people with ALS and some asymptomatic gene carriers.
- ALL ALS ↗NIH-funded natural-history studies; check current cohorts and participating sites.
- ALS TDI Guided Trial Finder ↗A starting point for possible matches; public listings do not contain every eligibility detail.
- National ALS Biorepository ↗Registry enrollment and informed consent are required; postmortem donation needs advance planning.
Research participation is voluntary. For interventional studies, discuss possible risks, benefits, travel, costs, and standard-care alternatives with the study team and your ALS clinician.
Volunteer or fundraise
Help at an event, offer a skill, organize a fundraiser, or invite your workplace or community to participate.
Give thoughtfully
Choose whether you want to support family care, services, research, advocacy, or equipment. Review the organization’s current programs and financial information before donating.
- Pete Frates ALS Foundation — family assistance ↗
- ALS TDI — drug-discovery research ↗
- ALS Association — services, advocacy, and research ↗
- IRS Tax Exempt Organization Search ↗Verify U.S. tax-exempt status and review available filings.