Support organisations
Patient groups and helplines near you, for people with a disease and for their families.
77 organisations for Systemic sclerosis (scleroderma) in all countries
Deutsche Rheuma-Liga Berlin e.V.
Berlin self-help organisation for people with rheumatic diseases and their relatives, offering self-help groups, exercise courses, patient education and counselling.
For Rheumatoid arthritis, Lupus (SLE), Osteoporosis and 3 more
Visit site: rheuma-liga-berlin.deAILS – Associazione Italiana Lotta alla Sclerodermia
Patient association for people with scleroderma (systemic sclerosis) in Italy; listed as a member of FESCA.
For Systemic sclerosis (scleroderma)
Visit site: ails.it
APMARR – Associazione Nazionale Persone con Malattie Reumatologiche e Rare
Patient association for people with rheumatic diseases including rheumatoid arthritis, ankylosing spondylitis / axial spondyloarthritis, scleroderma (systemic sclerosis) in Italy; listed as a member of ASIF, FESCA, AGORA.
For Rheumatoid arthritis, Ankylosing spondylitis, Systemic sclerosis (scleroderma)
Visit site: apmarr.itAPSB – Association des Patients Sclérodermiques de Belgique
Patient association for people with scleroderma (systemic sclerosis) in Belgium; listed as a member of FESCA.
For Systemic sclerosis (scleroderma)
Visit site: sclerodermie.be
Asociación Española de Esclerodermia (AEE)
Patient association for people with scleroderma (systemic sclerosis) in Spain; listed as a member of FESCA.
For Systemic sclerosis (scleroderma)
Visit site: esclerodermia.com
Association des Sclérodermiques de France
Patient association for people with scleroderma (systemic sclerosis) in France; listed as a member of FESCA.
For Systemic sclerosis (scleroderma)
Visit site: association-sclerodermie.frAutoimmune 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
BOPRD - Bulgarian Organisation for Patients with Rheumatic Diseases (ОПРЗБ)
Patient organisation offering articles, library, videos, projects and awareness campaigns on rheumatic diseases.
For Rheumatoid arthritis, Lupus (SLE), Systemic sclerosis (scleroderma) and 2 more
Visit site: revmatologia.org
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.brCIB-Liga vzw
Patient association for people with lupus, scleroderma (systemic sclerosis), Sjögren's disease in Belgium; listed as a member of Lupus Europe, FESCA, Sjögren Europe.
For Lupus (SLE), Systemic sclerosis (scleroderma), Sjögren's disease
Visit site: cibliga.beDeutsche Rheuma-Liga Landesverband Rheinland-Pfalz e.V.
Rheumatism patient league in Rhineland-Palatinate offering counselling, local groups, functional training, seminars and rare-disease talk circles, incl. scleroderma.
For Systemic sclerosis (scleroderma)
Visit site: rheuma-liga-rlp.de
EncontrAR
EncontrAR (GRUPAR), Brazilian patient organisation and information portal for people with rheumatic diseases.
For Rheumatoid arthritis, Lupus (SLE), Psoriatic arthritis and 2 more
Visit site: encontrar.org.brFundación 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
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
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.dkGILS – Gruppo Italiano per la Lotta alla Sclerodermia
Patient association for people with scleroderma (systemic sclerosis) in Italy; listed as a member of FESCA.
For Systemic sclerosis (scleroderma)
Visit site: sclerodermia.net
HUOS – Hrvatska udruga oboljelih od sklerodermije
Patient association for people with scleroderma (systemic sclerosis) in Croatia; listed as a member of FESCA.
For Systemic sclerosis (scleroderma)
Visit site: huos.hr
Inbar
Information, webinars, support groups and programmes for people with rheumatic, autoimmune and inflammatory diseases.
For Rheumatoid arthritis, Lupus (SLE), Ankylosing spondylitis and 2 more
Visit site: inbar.org.il
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.brLiga Portuguesa Contra as Doenças Reumáticas (LPCDR)
Patient and public education, patient information, support, volunteering, library and member benefits.
For Rheumatoid arthritis, Systemic sclerosis (scleroderma), Sjögren's disease
Visit site: lpcdr.org.ptLupus Kazakhstan
Foundation for people with lupus, arthritis and other autoimmune diseases, offering psychological and legal help, patient schools and a community; rheumatoid arthritis is listed.
For Rheumatoid arthritis, Lupus (SLE), Psoriasis and 1 more
Visit site: lupus.kz
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.myNational Scleroderma Foundation
US patient advocacy foundation for people with scleroderma, offering education, support groups, a HOPE Line, local chapters and research grants.
For Systemic sclerosis (scleroderma)
Visit site: scleroderma.org
Nationale Vereniging voor Lupus, APS, Sclerodermie en MCTD (NVLE)
Patient association for people with lupus, scleroderma (systemic sclerosis) in the Netherlands; listed as a member of Lupus Europe, FESCA.
For Lupus (SLE), Systemic sclerosis (scleroderma)
Visit site: nvle.org
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
Országos Scleroderma Közhasznú Egyesület
Patient association for people with scleroderma (systemic sclerosis) in Hungary; listed as a member of FESCA.
For Systemic sclerosis (scleroderma)
Visit site: szkleroderma.hu
Pulmoner Hipertansiyon ve Skleroderma Hasta Derneği (PAHSSc)
Turkish association of pulmonary hypertension and scleroderma patients founded by patients and relatives.
For Pulmonary arterial hypertension, Systemic sclerosis (scleroderma)
Visit site: pahssc.org.tr
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
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
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
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
Reumatikerförbundet
Knowledge, research funding, advocacy, free helpline (Reuma direkt) and local member groups.
For Rheumatoid arthritis, Lupus (SLE), Systemic sclerosis (scleroderma) and 3 more
Visit site: reumatiker.se
Revma Liga Česká republika, z.s.
Support, information and community for people with rheumatic diseases; advocacy for access to treatment.
For Rheumatoid arthritis, Lupus (SLE), Systemic sclerosis (scleroderma) and 2 more
Visit site: revmaliga.cz
Scleroderma and Raynaud's UK
Charity for people with scleroderma (systemic sclerosis) in the United Kingdom; listed as a member of FESCA.
For Systemic sclerosis (scleroderma)
Visit site: sruk.co.uk
Scleroderma Australia
Scleroderma Australia supports the scleroderma community with information on the disease and its types.
For Systemic sclerosis (scleroderma)
Visit site: sclerodermaaustralia.org.auScleroderma Canada
CRA-registered national charity serving the Canadian scleroderma community with support, education and advocacy.
For Systemic sclerosis (scleroderma)
Visit site: scleroderma.ca
Scleroderma Liga e.V.
Patient association for people with scleroderma (systemic sclerosis) in Germany; listed as a member of FESCA.
For Systemic sclerosis (scleroderma)
Visit site: scleroliga.de
Scleroderma New Zealand Support Group
Scleroderma New Zealand, a support group for people with scleroderma in New Zealand.
For Systemic sclerosis (scleroderma)
Visit site: scleroderma.org.nz
Scleroderma Victoria
Scleroderma Victoria, a patient support organisation for people with scleroderma in Victoria.
For Systemic sclerosis (scleroderma)
Visit site: sclerodermavictoria.com.au
sclerodermie.ch – Schweizerische Vereinigung der Sklerodermie-Betroffenen
Patient association for people with scleroderma (systemic sclerosis) in Switzerland; listed as a member of FESCA.
For Systemic sclerosis (scleroderma)
Visit site: sclerodermie.ch
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
Sklerodermie Selbsthilfe e.V.
Patient association for people with scleroderma (systemic sclerosis) in Germany; listed as a member of FESCA.
For Systemic sclerosis (scleroderma)
Visit site: sklerodermie-sh.deStop Scleroderma
Chicago-based foundation serving people with scleroderma and families through support groups, patient education conferences, resources and advocacy.
For Systemic sclerosis (scleroderma)
Visit site: stopscleroderma.org
Systeeminen skleroosi ja Morfea ry
Patient association for people with scleroderma (systemic sclerosis) in Finland; listed as a member of FESCA.
For Systemic sclerosis (scleroderma)
Visit site: sklero.org
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.orgUAE 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
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
Σύνδεσμος Ρευματοπαθών Κύπρου (CYLPER)
National association of people with rheumatic diseases in Cyprus (homepage content not readable beyond title).
For Rheumatoid arthritis, Lupus (SLE), Systemic sclerosis (scleroderma) and 3 more
Visit site: rheumatism.org.cy
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
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(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
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
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
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.ecAssociação 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
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
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
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.orgFederación 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
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
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
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.trNamibia 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
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.orgOrganization 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
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.phRare 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
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
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
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
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
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
Federation of European Scleroderma Associations
Umbrella of European scleroderma patient support and advocacy organisations; World Scleroderma Day (29 June), European patient survey, Patient World Congress, educational videos; refers individuals to national groups.
For Systemic sclerosis (scleroderma)
Visit site: fesca-scleroderma.euEuropean Patients' Forum (EPF)
Umbrella of European patient organisations and national patient coalitions.
For any disease
Visit site: eu-patient.eu
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.