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Support organisations

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

61 organisations for ANCA-associated vasculitis in all countries

  • Patient group

    Rheuma-Liga Schleswig-Holstein e.V. – Vaskulitis-Selbsthilfegruppe

    Rheumatism self-help organisation in Schleswig-Holstein whose vasculitis support group gives patients regular meetings in Kiel and Q&A sessions.

    For ANCA-associated vasculitis

    Visit site: rlsh.de
  • Patient groupAll of Spain

    AEVASI – Asociación Española de Vasculitis Sistémicas

    Patient association for people with ANCA-associated vasculitis in Spain; listed as a member of Vasculitis International.

    For ANCA-associated vasculitis

    Visit site: vasculitis.es
  • Patient groupAll of Italy

    AIVA – Associazione Italiana Vasculiti ODV

    Patient association for people with ANCA-associated vasculitis in Italy; listed as a member of Vasculitis International.

    For ANCA-associated vasculitis

    Visit site: aivaodv.it
  • Patient groupAll of Italy

    APACS – Associazione Pazienti Churg-Strauss

    Patient association for people with ANCA-associated vasculitis in Italy; listed as a member of Vasculitis International.

    For ANCA-associated vasculitis

    Visit site: apacs-egpa.org
  • Patient groupAll of France

    Association France Vascularites

    Patient association for people with ANCA-associated vasculitis in France; listed as a member of Vasculitis International.

    For ANCA-associated vasculitis

    Visit site: association-vascularites.org
  • Patient groupAll of Singapore

    Autoimmune Diseases Singapore

    Informal support group and information source for people in Singapore diagnosed with rheumatological and neurological autoimmune diseases.

    For Lupus (SLE), Ankylosing spondylitis, ANCA-associated vasculitis and 1 more

    Visit site: autoimmunediseases.sg
  • 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 Denmark

    Gigtforeningen

    Knowledge, help and support for people with arthritis: health information, everyday advice, exercise programmes, community activities.

    For Rheumatoid arthritis, Lupus (SLE), Psoriatic arthritis and 3 more

    Visit site: gigtforeningen.dk
  • 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

    Lungeforeningen

    Danish patient association for people with lung diseases such as COPD, pulmonary fibrosis and tuberculosis.

    For COPD, Tuberculosis, Idiopathic pulmonary fibrosis and 1 more

    Visit site: lunge.dk
  • 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 Norway

    Norsk Revmatikerforbund

    Membership organisation offering diagnosis knowledge, peer support, helpline (NRF hjelper deg) and member benefits.

    For Rheumatoid arthritis, Osteoporosis, Lupus (SLE) and 4 more

    Visit site: revmatiker.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 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 Finland

    Suomen Vaskuliittiyhdistys ry

    Patient association for people with ANCA-associated vasculitis in Finland; listed as a member of Vasculitis International.

    For ANCA-associated vasculitis

    Visit site: vaskuliittiyhdistys.fi
  • 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 Switzerland

    VASAS – Vaskulitis Schweiz

    Patient association for people with ANCA-associated vasculitis in Switzerland; listed as a member of Vasculitis International.

    For ANCA-associated vasculitis

    Visit site: vasas.ch
  • Patient groupAll of United States

    Vasculitis Foundation

    US-based nonprofit that supports, educates and empowers people with vasculitis, including ANCA-associated vasculitis, and funds research.

    For ANCA-associated vasculitis

    Visit site: vasculitisfoundation.org
  • Patient groupAll of Canada

    Vasculitis Foundation Canada

    Canadian foundation supporting people with vasculitis through care, education, awareness and research funding.

    For ANCA-associated vasculitis

    Visit site: vasculitis.ca
  • Patient groupAll of Ireland

    Vasculitis Ireland Awareness

    Patient association for people with ANCA-associated vasculitis in Ireland; listed as a member of Vasculitis International.

    For ANCA-associated vasculitis

    Visit site: vasculitis-ia.org
  • Patient groupAll of Poland

    Vasculitis Polska

    Patient association for people with ANCA-associated vasculitis in Poland; listed as a member of Vasculitis International.

    For ANCA-associated vasculitis

    Visit site: vasculitis.org.pl
  • Patient groupAll of India

    Vasculitis Society

    Vasculitis Society India: patient support, doctor directory, awareness programmes and community for vasculitis.

    For ANCA-associated vasculitis

    Visit site: vasculitissociety.com
  • Patient groupAll of Netherlands

    Vasculitis Stichting

    Foundation for people with ANCA-associated vasculitis in the Netherlands; listed as a member of Vasculitis International.

    For ANCA-associated vasculitis

    Visit site: vasculitis.nl
  • Patient groupAll of United Kingdom

    Vasculitis UK

    Charity for people with ANCA-associated vasculitis in the United Kingdom; listed as a member of Vasculitis International.

    For ANCA-associated vasculitis

    Visit site: vasculitis.org.uk
  • Patient groupAll of Czechia

    Vaskulitida.cz

    Patient association for people with ANCA-associated vasculitis in Czechia; listed as a member of Vasculitis International.

    For ANCA-associated vasculitis

    Visit site: vaskulitida.cz
  • Patient groupAll of Germany

    Vaskulitispatienten.de

    Patient association for people with ANCA-associated vasculitis in Germany; listed as a member of Vasculitis International.

    For ANCA-associated vasculitis

    Visit site: vaskulitispatienten.de
  • Patient groupAll of Greece

    Ελληνική Εταιρεία Αντιρευματικού Αγώνα (ΕΛ.Ε.ΑΝ.Α.)

    Psychological support, patient information and events for people with rheumatic diseases.

    For Rheumatoid arthritis, Lupus (SLE), Systemic sclerosis (scleroderma) and 3 more

    Visit site: arthritis.org.gr
  • 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 Japan

    膠原病・リウマチ・血管炎サポートネットワーク

    Kosapo – Collagen Disease, Rheumatism and Vasculitis Support Network (Japan): patient information and exchange.

    For Lupus (SLE), Rheumatoid arthritis, ANCA-associated vasculitis and 1 more

    Visit site: rheumatic-disease-community.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 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 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

    EULAR PARE (EULAR network of organisations of People with Arthritis/Rheumatism in Europe)

    Network of national patient organisations for people with rheumatic and musculoskeletal diseases (RMDs); EU-level advocacy, patient research partner training, Young PARE, webinars and support for national groups.

    For Rheumatoid arthritis, Lupus (SLE), Psoriatic arthritis and 4 more

    Visit site: eular.org
  • 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

    Vasculitis International

    Global umbrella network for vasculitis patient advocacy groups and expert centres; directory of patient groups by country and of expert hospitals, patient summits, help to start groups where none exist.

    For ANCA-associated vasculitis

    Visit site: vasculitisint.com
  • 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.