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Support organisations

Patient groups and helplines near you, for people with a disease and for their families.

61 organisations for Primary biliary cholangitis in all countries

  • Patient groupAll of Romania

    Asociația Pacienților cu Afecțiuni Hepatice din România (APAH-RO)

    Romanian NGO founded in 2009 by liver disease patients, with regional centres, advocating for hepatitis screening, diagnosis and access to treatment.

    For Hepatitis B, Fatty liver disease (MASLD/MASH), Primary biliary cholangitis

    Visit site: hepato.ro
  • Patient groupAll of Brazil

    Casa Hunter

    Casa Hunter: patient organisation in Brazil supporting people with rare diseases; member of RDI.

    For ALS (motor neurone disease), Amyloidosis, Cystic fibrosis and 16 more

    Visit site: casahunter.org.br
  • Patient groupAll of Germany

    Deutsche Leberhilfe e.V.

    Liver patient association: telephone advice for patients and relatives, information on liver cancer (HCC) and cholangiocarcinoma, self-help group directory.

    For Liver and biliary tract cancer, Hepatitis B, Fatty liver disease (MASLD/MASH) and 1 more

    Visit site: leberhilfe.org
  • Patient groupAll of Italy

    EpaC ETS

    Liver patient association with free helpline (numero verde), liver cancer guide for patients and caregivers and a treatment-centre finder (tumorefegato.it).

    For Liver and biliary tract cancer, Hepatitis B, Fatty liver disease (MASLD/MASH) and 1 more

    Visit site: epac.it
  • Patient groupAll of Spain

    Federacion Espanola del Higado (FEH, formerly FNETH)

    Liver patient federation: liver cancer and cholangiocarcinoma information, free psychological support, legal advice, accompaniment and temporary accommodation.

    For Liver and biliary tract cancer, Hepatitis B, Fatty liver disease (MASLD/MASH) and 1 more

    Visit site: fneth.org
  • Patient groupAll of France

    Federation SOS Hepatites & Maladies du foie

    Free national liver disease helpline staffed by people with lived experience, local associations, peer testimonies and Facebook groups; liver cancer is a current priority theme.

    For Liver and biliary tract cancer, Hepatitis B, Fatty liver disease (MASLD/MASH) and 1 more

    Visit site: soshepatites.org
  • Patient groupAll of Colombia

    Fundación Colombiana para Enfermedades Huérfanas (FUNCOLEHF)

    Fundación Colombiana para Enfermedades Huérfanas (FUNCOLEHF): foundation in Colombia supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: enfermedadeshuerfanas.org.co
  • Patient groupAll of Poland

    Fundacja Gwiazda Nadziei

    Polish foundation helping patients with liver diseases, especially hepatitis B and C and liver cancers, and promoting early diagnosis and access to therapy.

    For Hepatitis B, Fatty liver disease (MASLD/MASH), Primary biliary cholangitis and 1 more

    Visit site: gwiazdanadziei.pl
  • Patient groupAll of United States

    Genetic and Rare Diseases Information Center

    NIH information center (GARD) providing reliable information on genetic and rare diseases to patients and families via website and contact center.

    For Glioblastoma, Acute myeloid leukemia, Hodgkin lymphoma and 32 more

    Visit site: rarediseases.info.nih.gov
  • Patient groupAll of Slovakia

    HepHelpKlub

    Slovak civic association of patients with liver diseases and their relatives, member of ELPA.

    For Hepatitis B, Fatty liver disease (MASLD/MASH), Primary biliary cholangitis

    Visit site: hephelpklub.sk
  • Patient groupAll of Serbia

    Hronos – udruženje pacijenata sa bolestima jetre

    Serbian volunteer association of patients with liver diseases, founded in 2008, providing support, raising awareness and fighting hepatitis stigma.

    For Hepatitis B, Fatty liver disease (MASLD/MASH), Primary biliary cholangitis

    Visit site: hronos.rs
  • Patient groupAll of Brazil

    Instituto Vidas Raras

    Rare Lives Institute: patient organisation in Brazil supporting people with rare diseases; member of RDI, IPA.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: vidasraras.org.br
  • Patient groupAll of Denmark

    Leverforeningen Danmark

    Danish patient association for people with liver disease, member of the European Liver Patients' Association (ELPA).

    For Hepatitis B, Fatty liver disease (MASLD/MASH), Primary biliary cholangitis

    Visit site: leverforeningen.dk
  • Patient groupAll of Canada

    Liver Canada

    National liver health charity (formerly the Canadian Liver Foundation) offering research-based resources and support on liver diseases, incl. liver cancer, fatty liver, PBC and hepatitis B.

    For Liver and biliary tract cancer, Fatty liver disease (MASLD/MASH), Primary biliary cholangitis and 1 more

    Visit site: liver.ca
  • Patient groupAll of United Kingdom

    Liver UK - Liver Cancer UK (formerly British Liver Trust)

    Free nurse-led helpline for liver cancer and bile duct cancer, plus information booklets, just-diagnosed guidance and support from others.

    For Liver and biliary tract cancer, Hepatitis B, Fatty liver disease (MASLD/MASH) and 1 more

    Visit site: livercanceruk.org
  • Patient groupAll of United Kingdom

    Liver4Life

    UK charity supporting anyone affected by a liver condition, liver disease or liver cancer, with education, campaigns and a free helpline.

    For Hepatitis B, Fatty liver disease (MASLD/MASH), Primary biliary cholangitis and 1 more

    Visit site: liver4life.org.uk
  • Patient groupAll of Malaysia

    Malaysian Rare Disorders Society (MRDS)

    Malaysian Rare Disorders Society (MRDS): patient organisation in Malaysia supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: mrds.org.my
  • Patient groupAll of Netherlands

    Nederlandse Leverpatienten Vereniging (NLV)

    Liver patient association: information on HCC and cholangiocarcinoma, peer contact, liver cancer webinars (with NFK) and advocacy.

    For Liver and biliary tract cancer, Hepatitis B, Fatty liver disease (MASLD/MASH) and 1 more

    Visit site: leverpatientenvereniging.nl
  • Patient groupAll of Sweden

    Nya Riksföreningen Hepatit C – och andra leversjukdomar (RHC)

    Swedish non-profit association connecting and supporting people affected by hepatitis C and other liver diseases and their relatives.

    For Hepatitis B, Fatty liver disease (MASLD/MASH), Primary biliary cholangitis

    Visit site: rhep.se
  • Patient groupAll of Norway

    Prolar

    Norwegian liver patient organisation, member of the European Liver Patients' Association (ELPA).

    For Hepatitis B, Fatty liver disease (MASLD/MASH), Primary biliary cholangitis

    Visit site: prolar.no
  • Patient groupAll of Ghana

    Rare Diseases Ghana Initiative

    Rare Diseases Ghana Initiative: patient organisation in Ghana supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: rarediseaseghana.org
  • Patient groupAll of Nepal

    Rare Diseases Society Nepal

    Rare Diseases Society Nepal: patient organisation in Nepal supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: rarediseasenepal.org
  • Patient groupAll of Kenya

    Rare Disorders Kenya

    Rare Disorders Kenya: patient organisation in Kenya supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: rarediseasekenya.org
  • Patient groupAll of Zimbabwe

    Rare Disorders Zimbabwe (RDZ)

    Rare Disorders Zimbabwe (RDZ): patient organisation in Zimbabwe supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: raredisorderszim.org
  • Patient groupAll of Slovakia

    Šanca pre pečeň

    Slovak patient association for people with liver disease, member of the European Liver Patients' Association (ELPA).

    For Hepatitis B, Fatty liver disease (MASLD/MASH), Primary biliary cholangitis

    Visit site: sancaprepecen.eu
  • Patient groupAll of Albania

    Shoqata e Sëmundjeve të Rralla

    The Rare Diseases Association Albania is an NGO organising patients and active people in the rare disease field to improve their quality of life.

    For Glioblastoma, Acute myeloid leukemia, Childhood cancers and 34 more

    Visit site: rda-al.com
  • Patient groupAll of Switzerland

    Swiss HePa - Schweizer Leberpatienten Verein

    National liver patient association: personal counselling, self-help groups (in person and Zoom), liver tumour/HCC information and liver cancer month events.

    For Liver and biliary tract cancer, Primary biliary cholangitis, Hepatitis B and 1 more

    Visit site: swisshepa.org
  • Patient groupAll of Thailand

    Thai Rare Disease Foundation

    Thai Rare Disease Foundation: foundation in Thailand supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: thairdf.org
  • Patient groupAll of United Arab Emirates

    UAE Rare Disease Society

    UAE Rare Disease Society: patient organisation in United Arab Emirates supporting people with rare diseases.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: uaerds.ae
  • Patient groupAll of Israel

    עמותת חץ – ארגון ישראלי לבריאות הכבד

    Hetz: Israeli nonprofit association of liver patients, supporting patients and families and informing on liver diseases incl. fatty liver disease and PBC.

    For Fatty liver disease (MASLD/MASH), Primary biliary cholangitis, Hepatitis B

    Visit site: hetzliver.org
  • Patient groupAll of Iran

    بنیاد بیماری های نادر ایران

    Rare Disease Foundation of Iran (RADOIR): foundation in Iran supporting people with rare diseases; member of RDI, FIN.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: raredisease.ir
  • Patient groupAll of China

    病痛挑战基金会

    Illness Challenge Foundation: foundation in China supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: chinaicf.org
  • Patient groupAll of Taiwan

    財團法人罕見疾病基金會

    Taiwan Foundation for Rare Disorders: foundation in Taiwan supporting people with Fabry disease, Pompe disease; member of IPA, FIN.

    For Fabry disease, Pompe disease, Glioblastoma and 34 more

    Visit site: tfrd.org.tw
  • Umbrella organisationAll of South Korea

    (사)한국희귀·난치성질환연합회

    National federation of rare and intractable disease patient groups in Korea; runs policy advocacy, medical and welfare support and a shelter for rare disease patients and families.

    For Glioblastoma, Acute myeloid leukemia, Childhood cancers and 34 more

    Visit site: kord.or.kr
  • Umbrella organisationAll of Argentina

    Alianza Argentina de Pacientes (ALAPA)

    Alianza Argentina de Pacientes (ALAPA): national rare disease alliance in Argentina supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: alianzapacientes.org
  • Umbrella organisationAll of Dominican Republic

    Alianza Dominicana de Asociaciones de Pacientes (ADAPA)

    Alianza Dominicana de Asociaciones de Pacientes (ADAPA): national rare disease alliance in Dominican Republic supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: adapa.org.do
  • Umbrella organisationAll of Ecuador

    Alianza Nacional por la Salud (ANS)

    Quito-based alliance defending the right to health in Ecuador for patients with catastrophic, rare and orphan diseases; patient groups and foundations can join as members.

    For Glioblastoma, Acute myeloid leukemia, Childhood cancers and 34 more

    Visit site: ans.ec
  • Umbrella organisationAll of Brazil

    Associação Brasileira de Enfermidades Raras (FEBER)

    Associação Brasileira de Enfermidades Raras (FEBER): national rare disease alliance in Brazil supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: feberraras.wixsite.com
  • Umbrella organisationAll of Canada

    Canadian Organization for Rare Disorders

    National umbrella network for organizations and people with rare disorders, providing a common voice to advocate for health policy and services.

    For Glioblastoma, Acute myeloid leukemia, Childhood cancers and 34 more

    Visit site: raredisorders.ca
  • Umbrella organisationAll of Argentina

    Federación Argentina de Enfermedades Poco Frecuentes (FADEPOF)

    Federación Argentina de Enfermedades Poco Frecuentes (FADEPOF): national rare disease alliance in Argentina supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: fadepof.org.ar
  • Umbrella organisationAll of Colombia

    Federación Colombiana de Enfermedades Raras (FECOER)

    Federación Colombiana de Enfermedades Raras (FECOER): national rare disease alliance in Colombia supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: fecoer.org
  • Umbrella organisationAll of Mexico

    Federación Mexicana de Enfermedades Raras (FEMEXER)

    Federación Mexicana de Enfermedades Raras (FEMEXER): national rare disease alliance in Mexico supporting people with rare diseases; member of RDI, FIN.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: femexer.org
  • Umbrella organisationAll of Peru

    Federación Peruana de Enfermedades Raras (FEPER)

    Federación Peruana de Enfermedades Raras (FEPER): national rare disease alliance in Peru supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: feperperu.org
  • Umbrella organisationAll of India

    Indian Organization for Rare Diseases

    Indian Organization for Rare Diseases: national rare disease alliance in India supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: rarediseases.in
  • Umbrella organisationAll of Finland

    Munuais- ja maksaliitto

    Finnish national federation of kidney and liver patient associations offering information, hope and support to patients and their families.

    For Chronic kidney disease, Polycystic kidney disease, Hepatitis B and 2 more

    Visit site: muma.fi
  • Umbrella organisationAll of Türkiye

    Nadir Hastalıklar Federasyonu

    Turkish federation founded by rare-disease patients and families to raise awareness and address their problems; members are rare-disease patient associations.

    For Glioblastoma, Acute myeloid leukemia, Childhood cancers and 34 more

    Visit site: nadir.org.tr
  • Umbrella organisationAll of Namibia

    Namibia Alliance for Rare Diseases

    Namibia Alliance for Rare Diseases: national rare disease alliance in Namibia supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: rarediseasesnamibia.org
  • Umbrella organisationAll of United States

    National Organization for Rare Disorders

    US national rare disease alliance of patient organizations: education, patient assistance programs, rare disease database and policy advocacy.

    For Glioblastoma, Acute myeloid leukemia, Childhood cancers and 34 more

    Visit site: rarediseases.org
  • Umbrella organisationAll of India

    Organization for Rare Diseases India (ORDI)

    Organization for Rare Diseases India (ORDI): national rare disease alliance in India supporting people with rare diseases; member of RDI, IPA.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: ordindia.in
  • Umbrella organisationAll of Philippines

    Philippine Society for Orphan Disorders (PSOD)

    Philippine Society for Orphan Disorders (PSOD): national rare disease alliance in Philippines supporting people with rare diseases; member of RDI, IPA, FIN.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: psod.org.ph
  • Umbrella organisationAll of South Africa

    Rare Diseases South Africa

    Rare Diseases South Africa: national rare disease alliance in South Africa supporting people with rare diseases; member of RDI, IPA, FIN.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: rarediseases.co.za
  • Umbrella organisationAll of New Zealand

    Rare Disorders NZ

    Rare Disorders NZ: national rare disease alliance in New Zealand supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: raredisorders.org.nz
  • Umbrella organisationAll of Australia

    Rare Voices Australia

    Rare Voices Australia: national rare disease alliance in Australia supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: rarevoices.org.au
  • Umbrella organisationAll of France

    TRANSHÉPATE – Fédération des Déficients et Transplantés Hépatiques

    French federation of people with liver failure and liver transplant recipients, helping hepatic patients awaiting or after transplantation.

    For Hepatitis B, Fatty liver disease (MASLD/MASH), Primary biliary cholangitis

    Visit site: transhepate.org
  • Umbrella organisationAll of Slovenia

    Združenje za redke bolezni Slovenije (ZRBS)

    ZRBS is a voluntary association of Slovenian patient societies for specific groups of rare diseases; it co-organises the national Rare Disease Day conference.

    For Glioblastoma, Acute myeloid leukemia, Childhood cancers and 34 more

    Visit site: zrbs.eu
  • Umbrella organisationAll of China

    蔻德罕见病中心

    Chinese Organization for Rare Disorders (CORD): national rare disease alliance in China supporting people with rare diseases; member of RDI.

    For Acute lymphoblastic leukaemia, Acute myeloid leukemia, ALS (motor neurone disease) and 34 more

    Visit site: cord.org.cn
  • Umbrella organisationEurope

    European Liver Patients' Association (ELPA)

    European umbrella of national liver patient groups: liver disease information, HCC patient guide (with ESMO), clinical trial finder and liver cancer advocacy; points patients to member groups.

    For Liver and biliary tract cancer, Fatty liver disease (MASLD/MASH), Primary biliary cholangitis and 1 more

    Visit site: elpa.eu
  • Umbrella organisationEurope

    EURORDIS – Rare Diseases Europe

    Alliance of over 1,000 rare disease patient organisations, with a list of rare disease helplines by country.

    For Glioblastoma, Acute myeloid leukemia, Childhood cancers and 35 more

    Visit site: eurordis.org
  • Umbrella organisationInternational

    Global Liver Institute (GLI)

    Global liver health advocacy body with a Liver Cancers Council, patient/caregiver education events and advocate training; not a direct support service.

    For Liver and biliary tract cancer, Fatty liver disease (MASLD/MASH), Primary biliary cholangitis

    Visit site: globalliver.org
  • Umbrella organisationEurope

    European Patients' Forum (EPF)

    Umbrella of European patient organisations and national patient coalitions.

    For any disease

    Visit site: eu-patient.eu
  • Umbrella organisationInternational

    International Alliance of Patients' Organizations

    Global alliance of patient organisations of all diseases, promoting patient-centred healthcare.

    For any disease

    Visit site: iapo.org.uk

Do you know an organisation we missed? Write to support@frontlightresearch.com and we will add it.