Compass is still being developed and is effectively in beta. Some content and features may be incomplete, change, or not work as expected.
Content is anchored to trusted sources where available, but Compass has not yet been clinically reviewed. It provides general information rather than medical advice.
Feedback helps us identify gaps, errors, usability problems and opportunities to improve Compass over time.
Resource Directory
Tools, services, communities and programmes beyond Compass, described plainly: what each one does, who it is for, where it works, and what to know before you click.
Featured
A selection of useful starting points from across the ALS and MND community.
ALS Clinical Trials and Research
Communities and peer support · By Volunteer moderators on Facebook
A public Facebook group about ALS clinical trials, drug development, research papers, taking part in trials, and what members have experienced.
- Account needed
- Community run
ALS Research Collaborative
Registries and data contribution · By ALS Therapy Development Institute
The longest-running ALS natural history study. Take part from home with monthly surveys, a speech recording, and optional blood samples and genetic screening.
- Account needed
ALS Trial Navigator
Clinical trial discovery · By ALS Therapy Development Institute
Guided finder, browser and map of every registered ALS trial, refreshed daily from ClinicalTrials.gov and WHO ICTRP, run with NEALS.
ALStogether
Communities and peer support · By ALS Network
A Slack community for people living with ALS and their carers, with channels for general support, clinical trials, genetics, equipment, veterans and more.
- Slack
- Account needed
- Community run
ALSUntangled
Research tracking and review · By ALSUntangled (Duke ALS Clinic), sponsored by the ALS Hope Foundation
Peer-reviewed reviews of alternative and off-label ALS treatments, chosen by community vote and graded on mechanism, evidence, cases, trials and risks.
Find your local association
Local support and associations · By International Alliance of ALS/MND Associations
The Alliance's directory of more than eighty member associations in over forty countries, filterable by country, with a page and contact for each.
Clinical trial discovery
Find a trial, or be found by one.
ALS Trial Navigator
By ALS Therapy Development Institute
Guided finder, browser and map of every registered ALS trial, refreshed daily from ClinicalTrials.gov and WHO ICTRP, run with NEALS.
- Featured
SAVA AI
By EverythingALS (Peter Cohen Foundation)
A free AI matching agent that compares your shared health details with open ALS trials and alerts you when your eligibility changes. Endorsed by NEALS.
- Account needed
Matching means sharing your health information with EverythingALS. Read its privacy terms before you start.
TRICALS
By TRICALS (coordinated at UMC Utrecht)
Register once and be emailed when a trial you might fit opens at a European centre. A short questionnaire every three months keeps your details current.
- Account needed
Trial notices come from TRICALS centres, which are mostly in Europe.
ClinicalTrials.gov
By US National Library of Medicine
The public registry of clinical studies worldwide, and the source the ALS trial finders read. Complete but dense, and written for researchers.
Research tracking and review
Follow the evidence, and check a claim.
ALSUntangled
By ALSUntangled (Duke ALS Clinic), sponsored by the ALS Hope Foundation
Peer-reviewed reviews of alternative and off-label ALS treatments, chosen by community vote and graded on mechanism, evidence, cases, trials and risks.
- Featured
ALS News Today
By BioNews
Daily ALS news, columns by people living with ALS, and forums. Commercial, advertising-funded and quick, so read the source behind a headline.
- Advertising funded
ALS Reversals
By Duke ALS Clinic
The research programme that verifies rare, documented ALS reversals and runs small trials on what those people had in common.
MND Research Blog
By MND Association
Plain-language explanations of new MND research from the MND Association's research team, including a back-to-basics series.
Registries and data contribution
Add your experience to the record.
ALS Research Collaborative
By ALS Therapy Development Institute
The longest-running ALS natural history study. Take part from home with monthly surveys, a speech recording, and optional blood samples and genetic screening.
- Featured
- Account needed
EverythingALS studies
By EverythingALS (Peter Cohen Foundation)
Remote studies you can join from home: a speech and video biomarker study, a gene carrier study, and a trial-readiness study that builds your digital baseline.
- Account needed
Decision aids and planning
Structured help with the big choices.
MND Association decision aids
By MND Association
Interactive planning-ahead forms, an advance decision to refuse treatment form, end of life guidance and the MND Checklist, for people in England, Wales and NI.
The legal forms apply in England and Wales. The planning guidance is useful anywhere.
My ALS Decision Tool
By Les Turner ALS Foundation
Free, plain-language decision aids for the big ALS choices: feeding tubes, breathing support, tracheostomy, genetic testing and joining research.
Developed with pharmaceutical company funding, declared on the site. Services and funding named are American.
Care guides and helplines
Whole-site guides and people to call.
Your ALS Guide
By Your ALS Guide (independent, family-run)
An independent, ad-free guide to living with ALS in the United States: equipment, insurance, planning and a state-by-state directory of loan closets and services.
The loan closet directories and insurance pages apply to the United States only.
Practical Guide to ALS
By Guide to ALS (independent, family-run)
A practical guide written from the experience of a parent and full-time caregiver: equipment, everyday care, medical topics and legal considerations.
- Community run
Some legal, healthcare and product detail is specific to the United States.
Communities and peer support
Other people living this.
ALS Clinical Trials and Research
By Volunteer moderators on Facebook
A public Facebook group about ALS clinical trials, drug development, research papers, taking part in trials, and what members have experienced.
- Featured
- Account needed
- Community run
ALStogether
By ALS Network
A Slack community for people living with ALS and their carers, with channels for general support, clinical trials, genetics, equipment, veterans and more.
- Featured
- Slack
- Account needed
- Community run
ALS Forums
By ALS Forums (volunteer-run)
A long-running, independent, volunteer-moderated forum for people with ALS and their families, with sections for diagnosis, daily living, carers and loss.
- Community run
Hope Loves Company
By Hope Loves Company (US nonprofit)
Support for children and young people aged 6 to 25 who have a parent or grandparent with ALS, including free camps and online groups.
Camps are in the United States. Online programmes and resources reach further.
MND Association forum
By MND Association
The MND Association's moderated forum for people with MND, carers and family, free to read and open to anyone to join.
- Community run
Free training for people with ALS and carers on how clinical research works, whose graduates become research ambassadors advising trials.
Healing ALS
By Healing Advocates (nonprofit)
A community and conference focused on holistic approaches to ALS, including diet, supplements and lifestyle protocols, with the goal of helping people slow, pause or reverse progression.
- Free to try, paid to use fully
- Sells related products
- Community run
Important information
No controlled evidence supports reversal. Do not stop or change prescribed treatment on the strength of a testimonial.
PatientsLikeMe
By PatientsLikeMe (private company)
A large online community where people with ALS track symptoms, treatments and progression and compare notes. Run by a company that shares data with research partners.
- Account needed
- Commercial
- Community run
De-identified member data is shared with research and commercial partners. Read the privacy policy before joining.
Local support and associations
The association for where you live.
Find your local association
By International Alliance of ALS/MND Associations
The Alliance's directory of more than eighty member associations in over forty countries, filterable by country, with a page and contact for each.
- Featured
MND Association
By MND Association
The MND charity for England, Wales and Northern Ireland: MND Connect helpline, support grants, equipment loan, local branches and research funding.
Serves England, Wales and Northern Ireland. Scotland has MND Scotland.
The ALS Association
By The ALS Association
The largest US ALS organisation: care services, certified treatment centres, equipment loans, research funding and advocacy. Since 2023 not every state is a chapter.
Since the 2023 chapter separation, some US states are served by independent organisations instead.
Communication and voice
Keep your voice, and keep talking.
Bridging Voice
By Bridging Voice (US nonprofit)
Free one-to-one help setting up eye gaze, voice banking and phone mirroring, with a year of mentoring, for people with ALS in the US and beyond.
Team Gleason
By Team Gleason Foundation
Help with eye-gaze communication devices, voice preservation with a free ElevenLabs voice clone, and seat elevation grants for people with ALS in the US.
For people with an ALS diagnosis in the United States.
My-Own-Voice
By Acapela Group (commercial)
Voice banking you can start today from any country: record at home, use the synthetic voice free on the web, and buy it for a communication device later.
- Free to try, paid to use fully
- Account needed
- Commercial
Equipment and accessibility
Borrow, build or buy what helps.
ALS Association equipment loans
By The ALS Association
Free loans of wheelchairs, lifts, ramps and bathroom aids, and help with communication devices, for registered clients in the Association's US territories.
- Eligibility checked
Only in territories the Association still serves. Elsewhere, ask the independent organisation for your state.
Makers Making Change
By Neil Squire Society
Open-source assistive devices built by volunteer makers for the cost of materials, from switch mounts to a lip-controlled mouse.
State assistive technology programmes
By Association of Assistive Technology Act Programs (AT3 Center)
The directory of every US state's federally funded assistive technology programme: device demonstrations, short-term loans, reuse and financing.
United States only.
Apps and learning
Apps, education and news.
TENOS
By help cure ALS e.V. (nonprofit)
A free, open-source ALS app in 12 languages for tracking symptoms, medications and progression, sharing with carers and clinicians, and contributing anonymised data to research.
- App Store and Google Play
Your record is held only on your device, so if the device and its key are lost nobody can recover it.
ALS-App
By Ambulanzpartner Soziotechnologie (Germany)
A free app for a monthly ALS functional rating self-assessment, validated against clinic ratings, with your scores charted over time.
- App Store and Google Play
- Account needed
EverythingALS app
By EverythingALS (Peter Cohen Foundation)
A free iOS and Android app for tracking your health, logging nutrition, recording speech samples for research, and reaching peer guides.
- App Store and Google Play
- Account needed
Grants and funding
Research funding, and grants for care.
ALS Association research grants
By The ALS Association
Seed grants, postdoctoral fellowships, drug development and clinical trial awards, several open to applicants worldwide.
- Account needed
CDMRP ALS Research Program
By CDMRP (US Department of War, formerly Defense)
US federal ALS research funding with annual award mechanisms for therapeutic development, biomarkers and pilot trials. Open to researchers worldwide.
- Account needed
Target ALS
By Target ALS Foundation
Funds collaborative ALS research consortia and fellowships, and runs shared research cores: biofluids, tissue, stem cells, reagents, animal models and data.
Professional and researcher
Networks, guidelines and meetings.
EAN ALS guideline
By European Academy of Neurology
The current European clinical guideline for managing ALS, replacing the 2012 EFNS guideline, with graded recommendations across diagnosis and care.
NEALS
By Northeast ALS Consortium (Network of Excellence for ALS)
The ALS clinical research network of more than 160 sites in nine countries, for investigators and clinics; its trial listing now points to the ALS Trial Navigator.
- Membership
- Account needed