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Patient organisations

CANADA

Ontario-PEFFERLAW

CNA - Canadian Neuropathy Association

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SWEDEN

Region Stockholm-SOLNA

Neuroförbundet (Neurologiskt handikappades riksförbund)

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUSSELS

RaDiOrg - Rare Diseases Belgium - BE

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL-BRUXELLES (NEDER-OVER-HEEMBEEK)

Rarity United A.S.B.L. - Organisation pour les parents d'enfants atteints d'une maladie rare ou non diagnostiquée

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BELGIUM

NAMUR-WÉPION

Rare Disorders Belgium (RDB) ASBL - BE

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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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NORWAY

Østlandet-NESBRU

Foreningen for Muskelsyke

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ROMANIA

BACAU-BACAU

Organizatia trebuie- Bacau

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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

Galicia-A CORUÑA

FEGEREC - Federación Gallega de Enfermedades Raras e Crónicas

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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-BROTTBY

Willefonden

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SWEDEN

Region Stockholm-SOLNA

RBU-Riksförbundet för Rörelsehindrade Barn och Ungdomar

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ERN

UNITED KINGDOM

West Glamorgan-CARMARTHEN

Cerebra (Support for children with brain-related neurological conditions)

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AUSTRIA

STEIERMARK-GRAZ

CMT Austria

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BELGIUM

ANTWERPEN-BORGERHOUT

Spierziekten Vlaanderen vzw

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BELGIUM

HAINAUT-LA LOUVIERE

ABMM - Association Belge contre les Maladies neuro-Musculaires A.S.B.L.

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CYPRUS

Cyprus-NICOSIA

MDA - Cyprus Muscular Dystrophy Association

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FRANCE

AUVERGNE-RHONE-ALPES-PARIS

ARSER - Association pour la Recherche sur les Séquelles de la Radiothérapie

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FRANCE

ILE-DE-FRANCE-EVRY

AFM Téléthon - Association Française contre les Myopathies

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ERN

FRANCE

ILE-DE-FRANCE-MELUN

Association A-BRAS - Association pour la récupération des atteintes du plexus brachial et la prévention des risques associés lors des naissances

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FRANCE

ILE-DE-FRANCE-PARIS

AIDNAI - Association Internationale de Dystrophie Neuro Axonale Infantile

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FRANCE

PAYS DE LA LOIRE-LA BAULE-ESCOUBLAC

AFNP : Association Française contre les Neuropathies Périphériques

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FRANCE

PAYS DE LA LOIRE-PONT-SAINT-MARTIN

AINP - Association d'information sur les névralgies pudendales

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GERMANY

Baden-Württemberg-FREIBURG

DGM - Deutsche Gesellschaft für Muskelkranke e.V.

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IRELAND

County Dublin-DUBLIN

Muscular Dystrophy Ireland

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ITALY

EMILIA ROMAGNA-SAN LAZZARO DI SAVENA

Associazione ACMT-Rete per la Malattia di Charcot-Marie-Tooth ODV

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NETHERLANDS

Overijssel-ZWOLLE

VKS - Volwassenen, Kinderen en Stofwisselingsziekten

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NETHERLANDS

Utrecht-BAARN

Spierziekten Nederland

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SPAIN

Madrid-MADRID

ADOPEC: Asociación de Dolor Pélvico Perineal Crónico

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SWITZERLAND

Suisse Romande-LAUSANNE

AINP - Association d'Information sur la Névralgie Pudendale - Antenne Suisse

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UNITED KINGDOM

Cambridgeshire-PETERBOROUGH

Facial Palsy UK

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UNITED KINGDOM

Hertfordshire-HARPENDEN

AT Society - Ataxia-Telangiectasia Society

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BELGIUM

HAINAUT-MONS

Groupe de soutien aux personnes atteintes du syndrome de Guillain-Barré et leur famille [Groupe de l'ABMM]

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CZECH REPUBLIC

Hradec Kralove-HRADEC KRALOVE

Spolecnost C-M-T

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FINLAND

Finland-HELSINKI

Suomen Amyloidoosiyhdistys ry

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FRANCE

AUVERGNE-RHONE-ALPES-MEYZIEU CEDEX

AFPF - Association Fibroses Pulmonaires France

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FRANCE

BOURGOGNE-FRANCHE-COMTE-SAINT-GERMAIN

AFAT - Association Française des Algies Trigéminales

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FRANCE

GRAND-EST-LONGWY

APS - Association Poems Syndrome

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FRANCE

ILE-DE-FRANCE-PARIS

ANPSA - Association Nationale pour les Personnes SourdAveugles

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FRANCE

OCCITANIE-MONTPELLIER

Association Française du Syndrome de Guillain-Barré et toutes ses formes neurologiques

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FRANCE

OCCITANIE-SAINT ALBAN

CMT-France - Charcot-Marie-Tooth et neuropathies périphériques

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FRANCE

PROVENCE-ALPES-COTE D'AZUR-MARSEILLE

Association Française contre l'Amylose

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GERMANY

Berlin-BERLIN

Deutsche GBS CIDP Selbsthilfe e.V.

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GERMANY

Berlin-BERLIN

Trigeminusneuralgie Deutschland e.V.

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GERMANY

Nordrhein-Westfalen-DORTMUND

Mensch & Myotonie e.V.

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GERMANY

Thüringen-GERA

Bundesverband Deutsche Guillain-Barré-Syndrom-Vereinigung e.V.

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ITALY

ABRUZZO-SILVI MARINA

APAI - Associazione Patologie Autoimmuni Internazionale

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ITALY

EMILIA ROMAGNA-FAENZA

ASAMSI - Associazione Studio Atrofie Muscolari Spinali Infantili - ONLUS

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ITALY

LOMBARDIA-SARONNO

ALCRI - Associazione Italiana per la Lotta contro le Crioglobulinemie

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ITALY

PIEMONTE-COLLEGNO

AICMT - Associazione Italiana Malattia di Charcot-Marie-Tooth OdV

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ITALY

PUGLIA-ALTAMURA

A.MA.R.A.M. - Associazione Malattie Rare dell'Alta Murgia aps

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ITALY

PUGLIA-TRICASE

CIDP Italia ONLUS

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ERN

PORTUGAL

NORTE-VILA DO CONDE

APP - Associação Portuguesa de Paramiloidose

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SPAIN

Andalucía-MÁLAGA

ALMA: Asociación Lupus Málaga y Autoinmunes

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SPAIN

Andalucía-VALVERDE DEL CAMINO

ASVEA - Asociación Valverdeña de la Enfermedad de Andrade

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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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SWEDEN

Region Norrbotten-PITEÅ

FAMY Norrbotten

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SWEDEN

Region Västerbotten-SKELLEFTEÅ

Patientföreningen FAMY

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SWITZERLAND

Suisse Alémanique-WANGS

GBS & CIDP Initiative Schweiz

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UNITED KINGDOM

Berkshire-MAIDENHEAD

HEART UK - The Cholesterol Charity

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UNITED KINGDOM

Dorset-DORSET

Charcot-Marie-Tooth UK (CMT UK)

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UNITED KINGDOM

Greater London-LONDON

Sense (for deafblind people)

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UNITED KINGDOM

Lincolnshire-SLEAFORD

GAIN - Guillain-Barré & Associated Inflammatory Neuropathies

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UNITED KINGDOM

Wiltshire-SWINDON

TNA UK - Trigeminal Neuralgia Association UK

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FRANCE

AUVERGNE-RHONE-ALPES-CRANVES-SALES

Association "Les enfants de feu : unis face à l'érythermalgie primaire"

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GERMANY

Nordrhein-Westfalen-MÖNCHENGLADBACH

Informationsseite der seltenen Erkrankung Erythromelalgie

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ISRAEL

ISRAEL-HERZLIYA

FD - Israeli Association for Familial Dysautonomia

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ITALY

EMILIA ROMAGNA-FORLÌ

AMAR Onlus - Associazione Malattie Autoimmuni Rare

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UNITED KINGDOM

Greater London-LONDON

Familial Dysautonomia UK

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UNITED KINGDOM

Warwickshire-SHIPSTON ON STOUR

Spinal Muscular Atrophy UK

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UNITED KINGDOM

Warwickshire-STRATFORD UPON AVON

Spinal Muscular Atrophy UK (Formerly SMA Support UK)

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CYPRUS

Cyprus-LIMASSOL

Cyprus Red Cross Society-Children Therapy Centre Stella Soulioti

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ITALY

SARDEGNA-ORISTANO

Associazione Sindrome di Crisponi e Malattie Rare

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SPAIN

Comunidad Valenciana-ELCHE

AER-ELX: Asociación Enfermedades Raras Elche

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SPAIN

Comunidad Valenciana-VILLAJOYOSA

AHEDYSIA: Asociación Humanitaria de Enfermedades Degenerativas y Síndromes de la Infancia y Adolescencia

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ITALY

TOSCANA-RIGNANO SULL'ARNO

Progetto Mitofusina 2 ONLUS

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Alliances and umbrella organisations

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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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
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 Romande

VUARRENS

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

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BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL

BRUXELLES

European CMT Federation

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FRANCE

PAYS DE LA LOIRE

LE POULIGUEN

European Patient Organisation for Dysimmune and Inflammatory Neuropathies - EPODIN

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ERN