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Patient organisations

ITALY

LIGURIA-GENOVA

AMRI - Associazione per le Malattie Reumatiche Infantili

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SPAIN

Comunidad Valenciana-VALENCIA

Asociación Española de Fiebre Mediterránea Familiar y Síndromes Autoinflamatorios Stop FMF

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AUSTRIA

WIEN-WIEN

SHG Rheumalis - Selbsthilfegruppe für Eltern rheumakranker Kinder und Jugendlicher

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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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CYPRUS

Cyprus-NICOSIA

Cyprus League Against Rheumatism

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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

Bayern-SCHNAITSEE

dsai - Deutsche Selbsthilfe Angeborene Immundefekte e.V.

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GERMANY

Nordrhein-Westfalen-SENDENHORST

Bundesverband Kinderrheuma e.V.

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GREECE

ATTIKI-ATHENS

"95" - Rare Alliance Greece

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ITALY

SICILIA-SIRACUSA

AISAR - Associazione Italiana Sindromi Autoinfiammatorie Rare - ONLUS

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MALTA

MALTA-VALLETTA

The National Alliance for Rare Diseases Support - Malta

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SPAIN

Andalucía-ALMERÍA

FPF: Fundación Poco Frecuente

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SPAIN

Castilla - León-TROBAJO DEL CAMINO

ADERLE: Asociación de Enfermedades Raras de León

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SPAIN

Comunidad Valenciana-VALENCIA

ASPANIJER: Asociación de Padres de Niños y Jóvenes con Enfermedades Reumáticas de la Comunidad Valenciana

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SPAIN

Comunidad Valenciana-VALENCIA

FMF España - Asociación de enfermos de Fiebre Mediterránea Familiar y Síndromes Autoinflamatorios de España

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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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SWITZERLAND

Suisse Romande-GENÈVE

Ligue Genevoise contre le Rhumatisme

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AUSTRALIA

New South Wales-ARTARMON

Variety - the Children's Charity

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AUSTRALIA

New South Wales-DARLINGHURST

Genetic Alliance Australia

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AUSTRALIA

New South Wales-GLADESVILLE

AWCH - Association for the Wellbeing of Children in Healthcare

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AUSTRALIA

New South Wales-WOLLONGONG

IDFA - Immune Deficiencies Foundation Australia

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AUSTRALIA

Victoria-PARKVILLE

GSNV - Genetic Support Network of Victoria

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AUSTRIA

NIEDERÖSTERREICH-RIEDERBERG

Österreichische Selbsthilfegruppe für primäre Immundefekte (ÖSPID)

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AUSTRIA

SALZBURG-MARIA ALM

Österreichische Rheumaliga

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUSSELS

IPOPI - International Patient Organisation for Primary Immunodeficiencies

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BELGIUM

VLAAMS BRABANT-WILSELE

BePOPI - Belgische organisatie van en voor PID-patiënten/Organisation belge de et pour des patients DIP

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CYPRUS

Cyprus-NICOSIE

Pancyprian Association For Rare Genetic Diseases « Unique Smiles »

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DENMARK

Hovedstaden-GENTOFTE

Gigtforeningen

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ERN

DENMARK

Sjælland-HASLEV

The Danish Association for Immunodeficiencies

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FINLAND

Finland-HELSINKI

Immuunipuutospotilaiden yhdistys ry.

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FRANCE

GRAND-EST-TOUL

Association IRIS - Immunodéficience primitive, Recherche, Information, Soutien

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FRANCE

ILE-DE-FRANCE-PARIS

AFLAR - Association Française de Lutte Antirhumatismale

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ERN

GERMANY

Nordrhein-Westfalen-BONN

Deutsche Rheuma-Liga Bundesverband e.V.

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ERN

GREECE

ATTIKI-ATHENS

TO MELLON - Association of people with genetic disorders

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GREECE

THESSALONIKI-THESSALONIKI

Galinos - Panhellenic association of patients with immune deficiencies

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IRELAND

County Dublin-DUBLIN

Rare Ireland-Family Support Network

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ITALY

CAMPANIA-PONTECAGNANO FAIANO

AMAReC - Associazione Malattie Reumatiche Croniche ONLUS

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ITALY

LAZIO-ROMA

Anmar Italia Onlus - Associazione Nazionale Malati Reumatici

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ITALY

LOMBARDIA-BRESCIA

AIP - Associazione Immunodeficienze Primitive OdV

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ITALY

LOMBARDIA-VARESE

La Gemma Rara ODV

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ERN

ITALY

PUGLIA-LECCE

APMARR - Associazione Nazionale Persone con Malattie Reumatologiche e Rare - APS

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ERN

MOROCCO

Casablanca-CASABLANCA

HAJAR - Association de soutien aux patients atteints de déficits immunitaires primitifs

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NETHERLANDS

Noord-Brabant-GEFFEN

SAS - Stichting voor Afweerstoornissen

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POLAND

Lodz-LODZ

Immunoprotect - Stowarzyszenie na rzecz osob z niedoborami odpornosci

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POLAND

Poznan-ROKIETNICA

GEN - Stowarzyszenie na Rzecz Dzieci z Zaburzeniami Genetycznymi

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PORTUGAL

NORTE-VILA DO CONDE

A.P.D.I.P - Associação Portuguesa de Doentes com Imunodeficiência Primária

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PORTUGAL

SUL-LISBOA

LPCDR - Liga Portuguesa Contra as Doenças Reumáticas

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ROMANIA

SALAJ-ZALAU

Centrul de Informare pentru Boli Genetice Rare - Centre for Information about Rare Genetic Disorders

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SLOVAKIA

Presovsky kraj-BARDEJOV

ZOGO - Zdruzenie Ojedlinelych Genetickych Ochorenie

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SPAIN

Cataluña-BARCELONA

Fundación "BARCELONA PID FOUNDATION"

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ERN

SPAIN

Madrid-MADRID

AEDIP - Asociación Española de Déficits Inmunitarios Primarios

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SPAIN

Madrid-MADRID

LIRE: Liga Reumatológica Española, asociación de organizaciones y personas con enfermedades reumáticas y músculo esqueléticas

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SWEDEN

Region Stockholm-BROTTBY

Willefonden

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SWEDEN

Region Stockholm-STOCKHOLM

Reumatikerförbundet

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ERN

SWEDEN

Region Örebro län-ÖREBRO

Primär immunbristorganisationen

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SWITZERLAND

Suisse Alémanique-USTER

KMSK - Förderverein für Kinder mit seltenen Krankheiten

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SWITZERLAND

Suisse Alémanique-ZÜRICH

SVAI Schweizerische Vereinigung für Angeborene Immunodefekte - Association Suisse pour Immuno-Déficience Primitive - Associazione Svizzera per Immunodeficienze Primitive

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SWITZERLAND

Suisse Italienne-BELLINZONA

MGR - Associazione Malattie Genetiche Rare Svizzera Italiana

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SWITZERLAND

Suisse Romande-MONTHEY

AEMO - Association Enfance et Maladies Orphelines

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SWITZERLAND

Suisse Romande-SION

MaRaVal - maladies rares valais - seltene krankheiten wallis

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UNITED KINGDOM

Antrim and Newtownabbey-BELFAST

URDDAD Foundation - The Ultra Rare Disease, Disorders & Disabilities Foundation

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UNITED KINGDOM

Essex-COLCHESTER

PID UK - Primary Immunodeficiency UK

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UNITED KINGDOM

Greater London-LONDON

ARC - Antenatal Results and Choices

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UNITED KINGDOM

Surrey-EPSOM

Gene People

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UNITED KINGDOM

Surrey-OXTED

Unique - The Rare Chromosome Disorder Support Group

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ITALY

VENETO-VENEZIA

AIFP - Associazione Italiana Febbri Periodiche

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Alliances and umbrella organisations

AUSTRIA

WIEN

WIEN

Pro Rare Austria - Allianz für seltene Erkrankungen

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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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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

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

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ITALY

PIEMONTE

TORINO

Federazione Malattie Rare Infantili

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LATVIA

LATVIA

RIGA

Latvian Alliance for Rare Diseases

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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

FEDER: Federación Española de Enfermedades Raras

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SWITZERLAND

Suisse Alémanique

BRÜTTISELLEN

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

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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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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL

BRUSSELS

IPOPI - International Patient Organisation for Primary Immunodeficiencies Network

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