MASLD — patient organisations and public health portals
Every entry was verified by direct HTTP retrieval on the date given. Entries record what the organisation says about itself and about this disease; they are not endorsements, and organisational statistics are recorded as that organisation's public claim, with the peer-reviewed figures in statistics/STATISTICS.md. Ethics rules in README.md.
Verified, 2026-09-02
International
| Organisation |
URL |
Page title as retrieved |
Scope and stated role |
| Liver Patients International (LPI) |
https://www.liverpatientsinternational.org/ |
"Home - Liver Patients International" |
Founded 2019; describes itself as the global umbrella organisation for liver patient organisations, with over 15 member patient organisations, advocating in policy and operational contexts for equal access to liver healthcare |
| Global Liver Institute (GLI) |
https://www.globalliver.org/ |
"Global Liver Institute | Transforming the future of liver health." |
US-based non-profit operating globally; trains patient advocates through an Advanced Advocacy Academy; runs a "Beyond the Biopsy" initiative specifically to support worldwide adoption of non-invasive screening, a "Liver Health is Public Health" initiative, a Liver Health Symposium and a Veterans Health programme. States that ~1 in 3 people are living with MASLD |
| EASL (European Association for the Study of the Liver) |
https://www.easl.eu/ |
"EASL | The Home of Hepatology" |
Professional society rather than a patient organisation; included because it co-authored the 2024 MASLD clinical practice guideline and produces public-facing material |
| ALEH (Asociación Latinoamericana para el Estudio del Hígado) |
https://www.alehlatam.org/ |
"Inicio - ALEH - Asociación Latinoamericana para el Estudio del Hígado" |
Latin American professional society; co-signatory of the 2023 nomenclature statement and author of the 2025 Latin American MASLD recommendations |
National — patient organisations
| Organisation |
Country |
URL |
Page title as retrieved |
Notes |
| Fatty Liver Foundation |
USA |
https://www.fattyliverfoundation.org/ |
"Fatty liver Foundation silent killers - NAFLD & NASH & Cirrhosis" |
The only verified organisation whose entire remit is fatty liver disease. States a mission of improving diagnosis, treatment and support "through awareness, education, screening and patient advocacy", and campaigns for a nationwide low-cost transient elastography screening programme. Medical information is attributed to a named CEO in his public role |
| Liver UK (formerly British Liver Trust, merged with Children's Liver Disease Foundation) |
UK |
https://britishlivertrust.org.uk/ (also https://www.liveruk.org/) |
"Home - Liver UK" |
Recently renamed and merged; offers separate information routes for adults with liver disease, family members and carers of children, young people with liver disease, and people worried about liver health |
| Liver Canada (Canadian Liver Foundation) |
Canada |
https://liver.ca/patients-caregivers/liver-diseases/fatty-liver-disease/ |
"Fatty Liver Disease | Liver Canada" |
Uses MASLD and MASH terminology with a footnote mapping to the old names; publishes a structured patient page covering symptoms, lifestyle impacts and management, plus explainer videos. States MASLD affects at least 25% of Canadian adults, approximately 8 million people |
| Liver Foundation (Australia) |
Australia |
https://www.liver.org.au/your-liver/liver-diseases/fatty-liver-disease/ |
"Fatty Liver Disease - Liver Foundation" |
States about 1 in 3 Australian adults has fatty liver disease. Publishes patient video transcripts on its fatty-liver page — the richest verified non-journal patient-experience material found in this sweep. Includes a "Listen" accessibility function |
| Liver Foundation, West Bengal |
India |
https://www.liverfoundation.in/ |
"Home | Liver Foundation, West Bengal" |
Regional Indian liver-health organisation with community and public-health activity |
Government and public health portals
| Body |
Country |
URL |
Page title as retrieved |
Notes |
| NHS |
UK |
https://www.nhs.uk/conditions/non-alcoholic-fatty-liver-disease/ |
"Non-alcoholic fatty liver disease (NAFLD) - NHS" |
Titled for NAFLD with MASLD given as an alternative name. Lists symptoms as fatigue, feeling generally unwell, and right-sided abdominal discomfort — notably, it does not describe the condition as entirely asymptomatic. Signposts to Liver UK |
| NIDDK / NIH |
USA |
https://www.niddk.nih.gov/health-information/liver-disease/nafld-nash |
"Nonalcoholic Fatty Liver Disease (NAFLD) & NASH - NIDDK" |
Titled for NAFLD/NASH; last reviewed April 2021, and consequently states "No medicines have been approved to treat NAFLD or NASH" — a statement overtaken by two accelerated approvals (March 2024 and August 2025) |
| NICE |
UK |
https://www.nice.org.uk/guidance/ng49 |
"Overview | Metabolic dysfunction-associated steatotic liver disease (MASLD): assessment and management | Guidance | NICE" |
The only verified public-facing national guidance titled for MASLD |
| FDA |
USA |
https://www.fda.gov/news-events/press-announcements/fda-approves-first-treatment-patients-liver-scarring-due-fatty-liver-disease |
"FDA Approves First Treatment for Patients with Liver Scarring Due to Fatty Liver Disease | FDA" |
Public announcement of the first MASH approval |
Retrieval corrections from the independent audit, 2026-09-02
| Organisation |
URL |
Result |
Note |
| American Liver Foundation |
https://liverfoundation.org/ |
HTTP 200 on audit retry |
Verified; the earlier 403 was transient |
| European Liver Patients' Association (ELPA) |
https://elpa.eu/ |
HTTP 200 |
Verified at the organisation's current official domain; the former elpa-info.org address failed |
Global Liver Institute also returned HTTP 200 on audit retry, and the British Liver Trust address redirected successfully to Liver UK. Access failures are therefore not retained as evidence that a public source is unverifiable when a same-session retry or current official domain resolves it.
Terminology adoption, observed
A small but concrete finding falls out of retrieving these pages side by side on one date:
| Source |
Term used in the page title |
| NICE (UK guidance) |
MASLD |
| Liver Canada |
MASLD/MASH, with a footnote mapping to the old names |
| Liver Foundation (Australia) |
"Fatty liver disease" |
| Fatty Liver Foundation (USA) |
"NAFLD & NASH & Cirrhosis" in the title; MASLD used in the body as "the new umbrella term" |
| NHS (UK) |
NAFLD, MASLD given as an alternative |
| NIDDK (USA) |
NAFLD & NASH |
Three years after the multisociety renaming, the terms a patient meets when searching are still predominantly the old ones. This is consistent with the survey finding that 88% of patients use "fatty liver" at least sometimes and more than 84% never use "MAFLD" (Younossi 2024, PMID 37984709), and with the observation that adoption of new nomenclature by public-facing material lags professional adoption by years.
Structural observations
- Only one verified organisation is dedicated to this disease. Every other patient organisation listed covers liver disease broadly, with MASLD as one page among many — despite MASLD being the most prevalent liver disease in every country represented here.
- Two organisations campaign specifically on non-invasive testing — the Fatty Liver Foundation on nationwide low-cost elastography, and the Global Liver Institute through "Beyond the Biopsy" — which is a patient-side echo of the clinical shift documented in wiki/noninvasive-assessment.md.
- Government portals lag. The NIDDK page, last reviewed in April 2021, still tells patients no medicines are approved. That is the single most consequential piece of outdated public-facing information found in this sweep.
- The apparent tension between "the disease is asymptomatic" and the NHS listing fatigue and abdominal discomfort is not an error on the NHS's part; it matches what interview studies elicit when patients are asked directly (Doward 2021, PMID 33336323). See themes.md.