Conhecimento sobre doenças raras e medicamentos órfãos

ZSE Freiburg: Zentrum für Gefäßfehlbildungen Interdisciplinary angiomas and vascular malformations clinic

Universitätsklinikum Freiburg

Marfan- und Aortasprechstunde Interdisciplinary Marfan and Aortic diseases clinic

Deutsches Herzzentrum Berlin

ZSE Hamburg: Internationales Centrum für genetisch bedingte thorakale Aorten-Syndrome Aortic diseases clinic

UKE - Universitätsklinikum Hamburg-Eppendorf

ZSE Hamburg: Internationales Centrum für Marfan-Syndrom Marfan clinic

UKE - Universitätsklinikum Hamburg-Eppendorf

Angiom-Zentrum Marburg Angiom centre

Universitätsklinikum Gießen und Marburg GmbH, Standort Marburg

Morbus Osler Zentrum

Universitätsklinikum Gießen und Marburg GmbH, Standort Marburg

Westdeutsches Zentrum für vaskuläre Malformationen Angioedema clinic

Universitätsklinikum Essen

ZSE Essen: Westdeutsches Morbus Osler Zentrum Hereditary hemorrhagic telangiectasia clinic

Universitätsklinikum Essen

Zentrum für vaskuläre Anomalien im Kindesalter (Assoziiertes Nationales Zentrum im Europäischen Referenznetzwerk VASCERN) Center for Vascular Anomalies in Childhood (Associated National Center in the European Reference Network VASCERN)

Medizinische Universität Graz

Zentrum für genetische Aortopathien (Assoziiertes Nationales Zentrum im Europäischen Referenznetzwerk VASCERN) Center for Genetic Aortopathies (Associated National Center in the European Reference Network VASCERN)

Medizinische Universität Innsbruck

Thoraxchirurgische Ambulanz (Assoziiertes Nationales Zentrum im Europäischen Referenznetzwerk VASCERN) Thoracic surgery clinic (Associated National Center in the European Reference Network VASCERN)

Klinik Donaustadt

Aortakliniek - UZA Expert centre for rare diseases with thoracic aortic aneurysm and aortic dissection - UZA

Antwerp University Hospital - UZA

Multidisciplinair expertenteam/Centrum Zeldzame Ziekten - Universitair Ziekenhuis Antwerpen Multidisciplinary expert team/Centre for Rare Diseases - University Hospital of Antwerp

Antwerp University Hospital - UZA

Lymfecentrum - AZ Sint-Maarten Expert centre for lymphedema - AZ Sint-Maarten

AZ Sint-Maarten

Centre expert des Malformations Vasculaires - Cliniques universitaires Saint-Luc, UCLouvain Expert Centre for Vascular Anomalies - Cliniques universitaires Saint-Luc, UCLouvain

Cliniques universitaires Saint-Luc - UCLouvain

Equipe d'experts multidisciplinaire/Centre pour les maladies rares - Cliniques Universitaires Saint-Luc Multidisciplinary expert team/Centre for rare diseases - Saint-Luc University Hospital

Cliniques universitaires Saint-Luc - UCLouvain

Aorta Team Gent - UZ Gent Aorta Team Ghent - UZ Gent

Universitair ziekenhuis Gent (UZ Gent)

Centrum Medische Genetica Gent - UZ Gent General Genetic Counselling Clinic - Ghent University Hospital

Centrum Medische Genetica Gent - Universitair Ziekenhuis Gent

Multidisciplinair expertenteam/Centrum voor Zeldzame Ziekten - Universitair Ziekenhuis Gent Multidisciplinary expert team/Centre for Rare Diseases - University Hospital of Ghent

Universitair ziekenhuis Gent (UZ Gent)

Expertisecentrum voor lymfoedeem - UZ Leuven Expert Centre for lymphedema - UZ Leuven

UZ Leuven - Campus Gasthuisberg

Multidisciplinair expertenteam/Centrum Zeldzame Ziekten - Universitair Ziekenhuis Leuven Multidisciplinary expert team/Centre for Rare Diseases - University Hospitals Leuven

UZ Leuven - Campus Gasthuisberg

HHT-Center OUH OUH HHT Centre

Odense University hospital

Center for Rare Diseases

Rigshospitalet

Expert Center on Rare Multisystemic Vascular Diseases

Aarhus University Hospital - Skejby

CSUR - Unidad de referencia nacional en síndrome de Marfan CSUR - National unit of expertise for Marfan syndrome

Hospital Universitari Vall d'Hebron

CSUR - Unidad de referencia nacional en trastornos hereditarios de la queratinización CSUR - National unit of expertise for inherited disorders of keratinization

Hospital Sant Joan de Déu Barcelona

Expert Centre on Rare Multisystemic Vascular Diseases -FI

HUS - Helsinki University Hospital

Centre de référence de la maladie de Rendu-Osler - Site coordonnateur Reference centre for Rendu-Osler disease - Coordinator site

CHU de Lyon HCL - GH Est-Hôpital Femme Mère Enfant

Centre de référence des anomalies vasculaires superficielles - Site coordonnateur Reference centre for superficial vascular anomalies - Coordinator site

Hôpital Lariboisière

Centre de référence des lymphoedèmes primaires - Site constitutif Reference centre for primary lymphedema - Constitutive site

Hôpital Cognacq-Jay

Centre de référence des maladies artérielles rares - Site coordonnateur Reference centre for rare arterial diseases - Coordinator site

AP-HP. Centre - Université de Paris - HEGP Hôpital Européen Georges Pompidou

Centre de référence du syndrome de Marfan, maladies apparentées et maladies aortiques rares - Site coordonnateur Reference centre for Marfan syndrome, related diseases and rare aortic diseases - Coordinator site

CHU Paris Nord-Val de Seine - Hôpital Xavier Bichat-Claude Bernard

Marfan Szindróma Ambulancia Outpatient Clinic for Marfan Syndrome

Semmelweis University

Rare Dermatologial Conditions Clinic

Children's Health Ireland @ Crumlin

Centro di Riferimento per le anomalie vascolari Centre of Expertise for vascular anomalies

IRCCS Ospedale Pediatrico Bambino Gesù - SEDE GIANICOLO

Centro di Riferimento per le malattie rare della cute in età pediatrica Centre of Expertise for rare pediatric skin diseases

IRCCS Ospedale Pediatrico Bambino Gesù - SEDE GIANICOLO

Centro di Riferimento per la malattia di Rendu-Osler-Weber Centre of Expertise for Rendu-Osler-Weber disease

Azienda Ospedaliera "Ospedale Maggiore"

Centro di Riferimento per la sindrome di Marfan e sindromi correlate Centre of Expertise for Marfan syndrome and Marfan-related disorders

IRCCS-ICS Maugeri

Centro esperto per le malattie vascolari rare della retina e del sistema nervoso centrale Centre of expertise for rare central nervous system and retinal vascular disease

Fondazione IRCCS Istituto Neurologico "Carlo Besta"

Consulenza Genetica e Specialistica per cardiomiopatie ereditarie, mitocondriopatie, sindrome di Marfan e Loeys-Dietz Hereditary cardiomyopathies, mitochondriopathies and Marfan and Loeys-Dietz syndromes specialized and genetics clinic

Fondazione IRCCS Policlinico San Matteo

Centro di Riferimento per la telangectasia emorragica ereditaria Centre of Expertise for Rendu-Osler-Weber disease

Azienda Ospedaliero-Universitaria Consorziale Policlinico di Bari

Centro di Riferimento per la sindrome di Marfan e malattie correlate Centre of Expertise for Marfan syndrome and Marfan-related disorders

Azienda Ospedaliero Universitaria Careggi

The Center of Congenital Vascular Anomalies

Vilnius University Hospital Santariskiu Klinikos

Klinikk for arvelig bindevevssykdommer med arteriesykdom Multidisciplinary clinic for heritable connective tissue disorders

Oslo University Hospital

HECOVAN - Radboudumc Expertisecentrum voor Hemangiomen en Congenitale Vaatafwijkingen HECOVAN - Radboudumc Center of Expertise for Hemangiomas and Congenital Vascular Anomalies

Radboudumc - Radboud universitair medisch centrum

Radboudumc-Maastricht UMC+ Expertisecentrum voor Marfan Syndroom en Aanverwante Aandoeningen Radboudumc-Maastricht UMC+ Center of Expertise for Marfan and Related Disorders

Radboudumc - Radboud universitair medisch centrum

UMCG-Nij Smellinghe Expertisecentrum Lymfovasculaire Geneeskunde UMCG-Nij Smellinghe Expertise Center for Lympho-Vascular Medicine

UMCG - Universitair Medisch Centrum Groningen

Amsterdam UMC Expertisecentrum voor Marfan Syndroom en Aanverwante Aandoeningen Amsterdam UMC Expert Centre for Marfan Syndrome and Related Disorders

Amsterdam UMC

Centrum voor Pulmonale Vaatziekten-HHT Center for Pulmonary Vascular Diseases-HHT

St. Antonius Ziekenhuis, locatie Nieuwegein

LUMC Expertisecentrum voor Erfelijke Hersenvaatziektes LUMC Expert Center for Genetic Cerebral Small Vessel Disease

LUMC - Leids Universitair Medisch Centrum

Erasmus MC Expertisecentrum voor Erfelijke Hart- en Vaatziekten Erasmus MC Center of Expertise for Inherited Cardiovascular Diseases

Erasmus MC - Erasmus Medisch Centrum

Expert Center on Rare Multisystemic Vascular Diseases_Porto (VASCERN)

Unidade Local de Saúde de São João, EPE - ULSSJ, EPE [CHUSJ]

Expertteam för kärlanomalier, ERN Vascern Expert team for vascular anomalies, ERN Vascern

Karolinska Universitetssjukhuset

Expertteam för sällsynta kraniofaciala diagnoser -Kraniofacialt team, ERN Vascern Expert team for rare craniofacial disorders - Craniofacial Team, ERN Vascern

Karolinska Universitetssjukhuset

Expertteam för ärftliga aortasjukdomar, ERN Vascern Expert team for rare multisystemic vascular diseases, ERN Vascern

Karolinska Universitetssjukhuset

Expertteam för Kärlmissbildningar (vaskulära anomalier), ERN Vascern

Akademiska Sjukhuset

Expertteam för sällsynta kärlsjukdomar, ERN Vascern

Akademiska Sjukhuset