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Patient organisations

GERMANY

Baden-Württemberg-BIBERACH

Junge Nierenkranke Deutschland e.V.

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AUSTRIA

TIROL-INNSBRUCK

Verein Nephro Tirol

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUSSELS

RaDiOrg - Rare Diseases Belgium - BE

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BELGIUM

NAMUR-WÉPION

Rare Disorders Belgium (RDB) ASBL - BE

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CANADA

Colombie-Britannique-VANCOUVER

Rare Disease Foundation

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CANADA

Ontario-TORONTO

AboutFace

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FINLAND

Finland-HELSINKI

Munuais- ja maksaliitto, Njur- och leverförbundet

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ERN

FRANCE

ILE-DE-FRANCE-PARIS

Association France Rein

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FRANCE

NOUVELLE AQUITAINE-BORDEAUX

EwenLife Rare Maladies Rares

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FRANCE

OUTRE-MER-SAINT-PIERRE

Association pour la Sensibilisation aux Maladies Rares, Orphelines et Auto-Immunes à Saint-Pierre-et-Miquelon

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GERMANY

Nordrhein-Westfalen-LINNICH

Selbsthilfe für komplementvermittelte Erkrankungen MPGN und aHUS e.V.

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ERN

GERMANY

Rheinland-Pfalz-MAINZ

Bundesverband Niere e.V.

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GREECE

ATTIKI-ATHENS

"95" - Rare Alliance Greece

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IRELAND

County Dublin-DUBLIN

Irish Kidney Association

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MALTA

MALTA-VALLETTA

The National Alliance for Rare Diseases Support - Malta

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NETHERLANDS

Noord-Holland-BUSSUM

NVN - Nierpatiënten Vereniging Nederland

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NORWAY

Østlandet-OSLO

LNT - Landsforeningen for Nyrepasienter og Transplanterte

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PORTUGAL

NORTE-PORTO

ADRNP - Associação de Doentes Renais do Norte de Portugal

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PORTUGAL

SUL-LISBOA

APIR - Associação Portuguesa de Insuficientes Renais

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SPAIN

Andalucía-ALMERÍA

FPF: Fundación Poco Frecuente

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SPAIN

Andalucía-JAÉN

Enfermedades Raras: Mas Visibles

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SPAIN

Castilla - León-TROBAJO DEL CAMINO

ADERLE: Asociación de Enfermedades Raras de León

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SPAIN

Galicia-A CORUÑA

FEGEREC - Federación Gallega de Enfermedades Raras e Crónicas

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SPAIN

Madrid-MADRID

INDEPF: Instituto de Investigación y Desarrollo Social de Enfermedades Poco Frecuentes

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SPAIN

Murcia-TOTANA

D'GENES Asociación de Enfermedades Raras y Trastornos Generalizados del Desarrollo de Totana

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SPAIN

Navarra-PAMPLONA

GERNA: Grupo de enfermedades raras de Navarra

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SWEDEN

Region Stockholm-STOCKHOLM

Njurförbundet

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ERN

UNITED KINGDOM

Cambridgeshire-PETERBOROUGH

Kidney Research UK

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UNITED KINGDOM

Hampshire-ALTON

Kidney Care UK

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UNITED KINGDOM

Nottinghamshire-WORKSOP

NFK - National Kidney Federation

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FRANCE

BOURGOGNE-FRANCHE-COMTE-DIJON

Association du Syndrome Nail-Patella

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FRANCE

ILE-DE-FRANCE-CRÉTEIL

AMSN - Association des malades d'un syndrome néphrotique

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FRANCE

ILE-DE-FRANCE-PARIS

ANPSA - Association Nationale pour les Personnes SourdAveugles

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GERMANY

Bayern-MÜNCHEN

Alport Selbsthilfegruppe e.V.

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GERMANY

Nordrhein-Westfalen-KÖLN

Nephrokids Nordrhein-Westfalen e.V.

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IRELAND

County Dublin-DUBLIN

Anne Sullivan Centre

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ITALY

LAZIO-ROMA

Associazione Famiglie COL4A1-A2 APS

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ITALY

LOMBARDIA-MILANO

Progetto DDD ONLUS - Associazione per la lotta alla DDD

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ITALY

SARDEGNA-SASSARI

ASAL - Associazione Sindrome di Alport ODV

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NETHERLANDS

Zuid-Holland-BODEGRAVEN

NephcEurope

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SPAIN

Castilla - La Mancha-CIUDAD REAL

AESUR - Asociación Española Síndrome Uña-Rotula

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UNITED KINGDOM

Greater London-LONDON

Sense (for deafblind people)

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UNITED KINGDOM

Somerset-YEOVIL

NeST - Nephrotic Syndrome Trust

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UNITED KINGDOM

West Yorkshire-BINGLEY

NPS UK - Nail-Patella Syndrome UK

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AUSTRIA

KÄRNTEN-OBERDRAUBURG

SHG Sarkoidose (Morbus Boeck), Oberkärnten

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AUSTRIA

WIEN-WIEN

Österreichischer Verband der Herz- und Lungentransplantierten

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BELGIUM

LIEGE-LINCENT

Imagene CAPS Association in Belgium asbl/vzw

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BELGIUM

LIMBURG-MAASEIK

CIB-Liga - Liga voor Chronische Inflammatoire Bindweefselziekten VZW

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ERN

BELGIUM

OOST-VLAANDEREN-SINAAI

Sclero'ken VZW

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BELGIUM

VLAAMS BRABANT-LEUVEN

Vereniging voor sarcoïdosepatiënten VZW

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FINLAND

Finland-HELSINKI

Suomen Reumaliitto

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ERN

FRANCE

AUVERGNE-RHONE-ALPES-MEYZIEU CEDEX

AFPF - Association Fibroses Pulmonaires France

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FRANCE

AUVERGNE-RHONE-ALPES-SAINT JEOIRE PRIEURÉ

SI - Sarcoïdose Infos

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FRANCE

ILE-DE-FRANCE-PARIS

AFFMF - Association Française de la Fièvre Méditerranéenne Familiale et des autres fièvres récurrentes héréditaires

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FRANCE

ILE-DE-FRANCE-PARIS

Kourir - Association pour les enfants atteints d'arthrite chronique

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FRANCE

ILE-DE-FRANCE-SURESNES

Association Coeur Couleur

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FRANCE

NOUVELLE AQUITAINE-LE BOUSCAT

Association Française de la maladie de Behçet

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FRANCE

PAYS DE LA LOIRE-CARQUEFOU

AMWS/CINCA - Association pour l'aide aux personnes concernées par les maladies rares Muckle et Wells syndrome et CINCA - chronique infantile neurologique, cutané, articulaire

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FRANCE

PROVENCE-ALPES-COTE D'AZUR-MARSEILLE

Association Française contre l'Amylose

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GERMANY

Baden-Württemberg-HEILBRONN

Sklerodermie Selbsthilfe e.V.

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ERN

GERMANY

Hessen-KASSEL

Selbsthilfegruppe Leben mit Behcet-Deutschland

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GERMANY

Niedersachsen-WORPSWEDE

Nephie e.V. - Selbsthilfe idiopathisches nephrotisches Syndrom

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ERN

GERMANY

Nordrhein-Westfalen-BONN

Sarkoidose-Netzwerk e.V.

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ERN

GERMANY

Nordrhein-Westfalen-MEERBUSCH

Deutsche Sarkoidose-Vereinigung e.V.

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ERN

IRELAND

County Dublin-DUBLIN

Muscular Dystrophy Ireland

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ITALY

EMILIA ROMAGNA-BOLOGNA

ACSI - Amici contro la Sarcoidosi Italia

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ERN

ITALY

EMILIA ROMAGNA-FORLÌ

AMAR - Associazione Malattie Autoimmuni Rare ODV

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ITALY

LAZIO-ROMA

AS.MA.RA Associazione Malattia Rara - Sclerodermia ed altre Malattie Rare "Elisabetta Giuffre" - ONLUS

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ERN

ITALY

LIGURIA-GENOVA

AMRI - Associazione per le Malattie Reumatiche Infantili

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ITALY

LOMBARDIA-BORGARELLO

A.S.N.IT Onlus - Associazione Sindrome Nefrosica Italia

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ITALY

LOMBARDIA-MILANO

Lega Italiana Sclerosi Sistemica - APS

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ITALY

PUGLIA-ALTAMURA

A.MA.R.A.M. - Associazione Malattie Rare dell'Alta Murgia APS/ETS

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ITALY

TOSCANA-FIRENZE

ASSMAF-Associazione per lo Studio della Sclerosi Sistemica e delle Malattie Fibrosanti

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ERN

ITALY

TOSCANA-FIRENZE

ABARTU - Associazione Bambini e Adolescenti Reumatici -Tutti Uniti ODV

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ITALY

TOSCANA-LIVORNO

Associazione DO.RI.TA - "DO.nare RI.cevere TA.nto"

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ITALY

TOSCANA-PONTEDERA

SIMBA - Associazione Italiana sindrome e malattia di Behçet ODV

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ERN

ITALY

TRENTINO ALTO ADIGE-ROVERETO

AAMI - Associazione Amiloidosi Italiana

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ITALY

VENETO-VENEZIA

AIFP - Associazione Italiana Febbri Periodiche

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NETHERLANDS

Noord-Holland-HAARLEM

Sarcoidose.nl

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NETHERLANDS

Utrecht-UTRECHT

NVLE - Nationale Vereniging voor Mensen met Lupus, APS, Sclerodermie en MCTD

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PORTUGAL

SUL-LISBOA

ANDAI - Associação Nacional de Doentes com Artrite e outros Reumatismos da Infância

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SPAIN

Baleares-PALMA DE MALLORCA

ABAIMAR: Associació Balear d'Infants amb Malalties Rares

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SPAIN

Castilla - León-LEÓN

ALER: Asociación Leonesa de Enfermedades Raras y sin diagnóstico

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SPAIN

Cataluña-BARCELONA

Lliga Reumatològica Catalana

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SPAIN

Comunidad Valenciana-ELCHE

AER-ELX: Asociación Enfermedades Raras Elche

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SPAIN

Comunidad Valenciana-VALENCIA

Asociación Española de Fiebre Mediterránea Familiar y Síndromes Autoinflamatorios Stop FMF

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SPAIN

Galicia-VIVEIRO

ANES: Asociación Nacional de Enfermos de Sarcoidosis

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SPAIN

Madrid-LAS ROZAS

AEE: Asociación Española de Esclerodermia

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ERN

SPAIN

Madrid-MADRID

AEEB - Asociación Española de la Enfermedad de Behçet

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SPAIN

Madrid-SAN SEBASTIÁN DE LOS REYES

ANADEJU: Asociación Nacional de Dermatomiositis Juvenil

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SWITZERLAND

Suisse Alémanique-BASEL

Rheumaliga beider Basel

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SWITZERLAND

Suisse Alémanique-ZÜRICH

Rheumaliga Schweiz - Ligue suisse contre le rhumatisme - Lega svizzera contro il reumatismo

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SWITZERLAND

Suisse Romande-YVERDON-LES-BAINS

Schweizerische Sarkoidose-Vereinigung SSARV/AScS - Association Suisse contre la Sarcoïdose SSARV - AScS

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TURKEY

TURKEY-ISTANBUL

Nadir Otoimmun/otoinflamatuar Romatizmal Hastaliklar Dayanisma Dernegi

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ERN

UNITED KINGDOM

Greater London-LONDON

Behcet's UK

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UNITED KINGDOM

Greater London-LONDON

SarcoidosisUK

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UNITED KINGDOM

Hampshire-SOUTHAMPTON

Myositis UK

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AUSTRIA

STEIERMARK-GRAZ

SHG Lupus Erythematodes LES Steiermark

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUXELLES

Association Lupus Erythémateux ASBL

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ERN

BELGIUM

HAINAUT-SAINT MAUR

CLAIR ASBL - Contre Les Affections Inflammatoires Rhumatismales

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ERN

DENMARK

Hovedstaden-KØBENHAVN

SLE/lupus-Diagnosenetværket

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ERN

FINLAND

Finland-HELSINKI

Lupus Suomi

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ERN

FRANCE

AUVERGNE-RHONE-ALPES-SAINT-CHAMOND

AFPCA - Association Francophone contre la Polychondrite Chronique Atrophiante

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FRANCE

GRAND-EST-CUVRY

AFL+ - Association Française du Lupus et autres maladies auto-immunes

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ERN

FRANCE

OCCITANIE-CAHUZAC SUR VERE

Association Lupus France

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ERN

FRANCE

OUTRE-MER-LE LAMENTIN

ALAG - Association Lupus Antilles-Guyane

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FRANCE

OUTRE-MER-SAINTE CLOTILDE

Association Lupus Réunion

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FRANCE

PAYS DE LA LOIRE-LA GAUBRETIÈRE

Association Takayasu France

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GERMANY

Nordrhein-Westfalen-WUPPERTAL

Lupus Erythematodes Selbsthilfegemeinschaft e.V.

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ERN

GREECE

GREECE-ATHENS

Hellenic League against Rheumatism

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ERN

ITALY

LAZIO-ROMA

LES - Gruppo Italiano per la Lotta contro il Lupus Eritematoso Sistemico - ONLUS

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ERN

ITALY

LOMBARDIA-AROSIO

APACS - Associazione Pazienti Sindrome di Churg Strauss

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ERN

ITALY

PIEMONTE-TORINO

OISCS - Organizzazione Italiana Sindrome di Churg-Strauss

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ITALY

VENETO-PADOVA

ALCRI - Associazione Italiana per la Lotta contro le Crioglobulinemie

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NETHERLANDS

Gelderland-SILVOLDE

Vasculitis Stichting

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SLOVAKIA

Bratislavsky kraj-BRATISLAVA

Liga proti reumatizmu - Klub Motýlik

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ERN

SWITZERLAND

Suisse Alémanique-MEIKIRCH

VASAS Schweizerische Vereinigung für Grossgefäss- und ANCA-Vaskulitiden

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SWITZERLAND

Suisse Alémanique-ZÜRICH

lupus suisse - Schweizerische Lupus Vereinigung

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ERN

UNITED KINGDOM

Essex-ROMFORD

Lupus UK

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Alliances and umbrella organisations

AUSTRIA

WIEN

WIEN

Pro Rare Austria - Allianz für seltene Erkrankungen

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AUSTRIA

WIEN

WIEN

Lobby4Kids

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL

BRUSSELS

FEDERG - Federation of European Associations of Patients affected by Rare and/or Genetic Renal Diseases

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL

BRUSSELS

RaDiOrg - Rare Diseases Belgium

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BELGIUM

NAMUR

WÉPION

Rare Disorders Belgium (RDB) ASBL

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BULGARIA

 South-West region

SOFIA

NAPRD: National Alliance of People with Rare Diseases

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CANADA

Ontario

TORONTO

CORD - Canadian Organization for Rare Disorders

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CROATIA

CROATIA

ZAGREB

Hrvatski savez za rijetke bolesti

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CYPRUS

Cyprus

NICOSIA

Cyprus Alliance for Rare Disorders

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DENMARK

Hovedstaden

TAASTRUP

Rare Disorders Denmark

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FINLAND

Finland

HELSINKI

Harvinaiset-verkosto

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FINLAND

Finland

HELSINKI

HARSO - Rare Diseases Alliance of Finland

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FRANCE

ILE-DE-FRANCE

PARIS

Alliance Maladies Rares

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FRANCE

ILE-DE-FRANCE

PARIS

EURORDIS - Rare Diseases Europe

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ERN
FRANCE

ILE-DE-FRANCE

SAINT-MICHEL-SUR-ORGE

SOLHAND - Solidarité Handicap ''autour des maladies rares''

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GERMANY

Berlin

BERLIN

ACHSE - Allianz Chronischer Seltener Erkrankungen e.V.

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GREECE

ATTIKI

ATHENS

PESPA - Greek Alliance for Rare Disease Network

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HUNGARY

Közép-Magyarország

BUDAPEST

HUFERDIS - RIROSZ - Hungarian Federation of People with Rare and Congenital Diseases

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IRELAND

County Dublin

DUBLIN

RDI-Rare Disease Ireland

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IRELAND

County Dublin

DUBLIN

IPPOSI - The Irish Platform for Patient Organisations, Science and Industry

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ITALY

LAZIO

ROMA

UNIAMO FIMR onlus - Federazione Italiana Malattie Rare

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ERN
ITALY

PIEMONTE

TORINO

Federazione Malattie Rare Infantili

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LATVIA

LATVIA

RIGA

Latvian Alliance for Rare Diseases

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MOROCCO

Casablanca

CASABLANCA

Alliance Maladies Rares Maroc

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NETHERLANDS

Utrecht

SOEST

VSOP - Vereniging Samenwerkende Ouder- en Patiëntenorganisaties

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POLAND

Warszawa

WARSAW

ORPHAN - Krajowe Forum na rzecz terapii chorób rzadkich

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PORTUGAL

SUL

LISBOA

Fedra - Federação de Doenças Raras de Portugal

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PORTUGAL

SUL

LISBOA

RD-Portugal - União das Associações das Doenças Raras de Portugal,

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ROMANIA

SALAJ

ZALAU

RONARD - Alianta Nationala Pentru Boli Rare Romania Network

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SERBIA

Serbia

BELGRADE

NORBS - Nacionalna organizacija za retke bolesti Srbije

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SLOVAKIA

Bratislavsky kraj

PEZINOK

Slovenska aliancia zriedkavych chorob

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SPAIN

Cataluña

BARCELONA

FECAMM - Federació Catalana de Malalties Minoritaries

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SPAIN

Madrid

MADRID

ALCER: Federación Nacional de Asociaciones para la Lucha Contra las Enfermedades del Riñón

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SPAIN

Madrid

MADRID

FEDER: Federación Española de Enfermedades Raras

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SWEDEN

Region Stockholm

SUNDBYBERG

Sällsynta diagnoser Network

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SWITZERLAND

Suisse Romande

VUARRENS

ProRaris - Alliance Maladies Rares-Suisse; Allianz Seltener Krankheiten-Schweiz; Alleanza Malattie Rare-Svizzera

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UNITED KINGDOM

Greater London

LONDON

Contact - For families with disabled children

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UNITED KINGDOM

Greater London

LONDON

GA UK : Genetic Alliance UK

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UNITED KINGDOM

Greater London

LONDON

RDUK : Rare Disease UK

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UNITED KINGDOM

Greater London

LONDON

SHCA - Specialised Health Care Alliance

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GERMANY

Nordrhein-Westfalen

MEERBUSCH

EPOS: Europäischer Dachverband der Selbsthilfe-Vereinigungen für Sarkoidose und andere granulomatöse Erkrankungen

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NETHERLANDS

Zuid-Holland

BODEGRAVEN

NephcEurope Network

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SWITZERLAND

Suisse Alémanique

BRÜTTISELLEN

FMF & AID Global Association - Familial Mediterranean Fever & Autoinflammatory Diseases

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL

BRUSSELS

Lupus Europe

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