Center for Medical Genetics
Ghent University Hospital
De Pintelaan 185
9000 Ghent
BELGIUM
Prof. Anne De Paepe
anne.depaepe@ugent.be
Outpatient clinic for Ehlers-Danlos syndrome (all variants):
Prof. Dr. Fransiska Malfait Fransiska.Malfait@Ugent.be
Prof. Dr. Bert Callewaert
Bert.Callewaert@Ugent.be

Center for Medical Genetics
Ghent University Hospital
De Pintelaan 185
9000 Ghent
BELGIUM
Prof. Anne De Paepe
anne.depaepe@ugent.be
Molecular diagnosis of Ehlers-Danlos syndrome, all types:
Fransiska.Malfait@Ugent.be

Center for Medical Genetics
Ghent University Hospital
De Pintelaan 185
9000 Ghent
BELGIUM
Prof. Anne De Paepe
anne.depaepe@ugent.be
Project title: Integration of the clinical, ultrastructural, biochemical and molecular-genetic findings in the Ehlers-Danlos syndrome and related phenotypes:
Fransiska.Malfait@Ugent.be

Department of Pediatric Dermatology
Children's Hospital - Faculty Hospital Brno, Masaryk University Brno
Genodermatoses Center
Cernopolni 9
66263 Brno
CZECH REPUBLIC
Hana Buchova Assist. Prof., MD., Ph.D.
hbuchov@fnbrno.cz
Blanka Pinková MD
bpinkova@fnbrno.cz
Jana Kýrová MD., Ing.
jana.kyrova@fnbrno.cz
Zuzana Nagy MD
zuzana@strasak.com
Outpatient clinic for Genodermatoses or rare diseases

Centre of Molecular Biology and Gene Therapy (CMBGT)
Faculty Hospital Brno, Masaryk University Brno
Jihlavská 20
62500 Brno
CZECH REPUBLIC
Lenka Fajkusová, Assist. Prof., Ph.D.
lfajkusova@fnbrno.cz
Lenka Kopecková, Ph.D.
lenka.kopeckova@fnbrno.cz
Romana Borská, Mgr.
romana.borska@fnbrno.cz
Molecular diagnosis of Genodermatoses and rare diseases

Department of Pathology
St. Anne´s University Hospital, Masaryk University Brno
Pekarska 53
656 91 Brno
CZECH REPUBLIC
Karel Vesely MD, Ph.D.
karel.vesely@fnusa.cz
Histology/ Immunohistochemistry of Epithelial Adhesion Disorders
Electron microscopy of Epithelial Adhesion Disorders

IGA MH CR, project NT14585: Genodermatoses- molecular causes and diagnostics (2013-2015);

Department of Clinical Genetics
Rigshospitalet
Blegdamsvej 9
2100 Copenhagen
DENMARK
Pr Flemming Skovby
Centre of reference for rare disabilities -KSH

MAGEC
Service de dermatologie
CHU Paris Seine-Saint-Denis - Hôpital Avicenne
125 Rue de Stalingrad
93009 Bobigny cedex
FRANCE
Pr Frédéric Caux
Clinic associated to reference centre for genetic dermatologic diseases

Department of Dermatology and Pediatric Dermatology, National reference centre for rare skin diseases
CHU de Bordeaux
Hôpital Pellegrin Enfants, Place Amélie Raba Léon
33076 Bordeaux cedex
FRANCE
Prof. Alain Taïeb
alain.taieb@chu-bordeaux.fr
Outpatient clinic for Genodermatoses or rare diseases
Outpatient clinic for Pediatric dermatology

UF de Génétique Médicale
GHU Paris Île-de-France Ouest - Hôpital Raymond Poincaré
104 Boulevard Raymond Poincaré
92380 Garches
FRANCE
Pr Dominique P. Germain
secretariat.genetique@rpc.aphp.fr
Reference centre for Fabry disease and hereditary diseases of connective tissue (Coordinator Pr. Dominique P. GERMAIN)

Service de dermatologie Pôle des Spécialités Médico-Chirurgicales et
Pôle Enfants CHRU de Lille -
Hôpital Claude Huriez
Rue Michel Polonovski
59037 Lille cedex
FRANCE
Dr Benoît Catteau
Competence centre for rare genetic skin diseases

Service de néphrologie
Hôpital de la Conception - AP-HM
147 Boulevard Baille
13385 Marseille cedex 5
FRANCE
Pr Bertrand Dussol
Clinic associated to reference centre for Fabry disease and hereditary diseases of connective tissue

Service de Dermatologie
Hôpital Archet 2
BP 3079
06202 Nice Cedex
FRANCE
Prof. Jean Paul Ortonne
Prof. Jean Philippe Lacour
Dr. Christine Chiaverini
lacour@unice.fr
chiaverini.c@chu-nice.fr
Outpatient clinic for genodermatosis

Necker hospital for sick children
Department of Genetics
Inserm U781, Tour Lavoisier
75743 Paris cedex 15
FRANCE
Prof. Alain Hovnanian, M.D., Ph.D.
alain.hovnanian@inserm.fr
Outpatient clinic for Genodermatoses or rare diseases

MAGEC centre, Dermatology department
Necker Enfants Malades Hospital, Assistance Publique
149 rue de Sèvres
75015 Paris
FRANCE
Prof. Bodemer Christine
Christine.Bodemer@nck.aphp.fr
Outpatient clinic for Genodermatoses or rare diseases
Outpatient clinic for Pediatric dermatology

C.R. des maladies vasculaires rares
7e étage - Pôle B
CHU Paris Ouest - Hôpital Européen Georges Pompidou
20 Rue Leblanc
75908 Paris cedex 15
FRANCE
Pr Xavier Jeunemaitre
Clinic associated to reference centre for rare vascular diseases (specialised in Ehlers-Danlos syndrome, vascular type)

MAGEC centre, Dermatology department
Necker Enfants Malades Hospital, Assistance Publique,
149 rue de Sèvres
75015 Paris
FRANCE
Prof. Christine Bodemer
Christine.Bodemer@nck.aphp.fr
Histology/ Immunohistochemistry of Ehlers-Danlos syndrome, arthrochalasis type
Electron microscopy of Ehlers-Danlos syndrome, arthrochalasis type

Department of Dermatology, Venerology and Allergy
Charitéplatz 1
10117 Berlin
GERMANY
Prof. Ulrike Blume-Peytavi
Dr. Karola Stieler
karola.stieler@charite.de
Outpatient clinic for Connective Tissue Disorders
Outpatient clinic for Genodermatoses or rare diseases
Outpatient clinic for Pediatric Dermatology

Ambulantes Gesundheitszentrum der Charite
Institut für Medizinische Genetik und Humangenetik
Charité - Universitätsmedizin Berlin (CVK)
Augustenburger Platz 1
13353 Berlin
GERMANY
Dr Luitgard Graul-Neumann
Dr Denise Horn
Ehlers-Danlos syndrome and other connective tissue diseases clinic

Hautklinik
Universitätsklinikum Düsseldorf
Moorenstr. 5
40225 Düsseldorf
GERMANY
Pr Bernhard Homey
Dermatology clinic

Center for Human Genetics Freiburg
Heinrich-von-Stephan-Str. 5
79100 Freiburg
GERMANY
Prof. Dr. Jürgen Kohlhase, MD
jkohlhase@humangenetik-freiburg.de
Outpatient clinic for Genodermatoses or rare diseases

Abteilung für pädiatrische Dermatologie und Allergologie
Katholisches Kinderkrankenhaus Wilhelmstift GmbH
Liliencronstraße 130
22149 Hamburg
GERMANY
Pr Peter Höger
hautambulanz@kkh-wilhelmstift.de
Dermatology clinic

Department of Dermatology
University of Cologne
Kerpener Strasse 62
50937 Köln
GERMANY
Dr. Iliana Tantcheva-Poor
iliana.tantcheva-poor@uk-koeln.de
Outpatient clinic for genodermatoses or rare diseases

Klinik für Chirurgie des Stütz- und Bewegungsapparates - Sektion für Orthopädie
Universitätsklinikum Schleswig-Holstein - Campus Lübeck
Ratzeburger Allee 160
23538 Lübeck
GERMANY
Dr Martin Russlies
Ehlers-Danlos clinic

Department of Dermatology
Ludwig Maximilian University Munich
Frauenlobstraße 9-11
80337 München
GERMANY
PD Dr. Markus Braun-Falco
markus.braun-falco@med.uni-muenchen.de
Outpatient clinic for genodermatoses and rare skin diseases
Outpatient clinic for Pediatric Dermatology

Department of Dermatology
University Hospital
Von-Esmarch-Str. 58
48149 Muenster
GERMANY
PD Dr. Vinzenz Oji
Vinzenz.oji@ukmuenster.de
Outpatient clinic for Keratinization Disorders
and other genodermatoses

Center for Human Genetics Freiburg
Heinrich-von-Stephan-Str. 5
79100 Freiburg
GERMANY
Prof. Dr. Jürgen Kohlhase MD
jkohlhase@humangenetik-freiburg.de
Molecular diagnosis of Ehlers-Danlos syndrome, vascular type

Center for Human Genetics and Laboratory Medicine
Lochhamer Str. 29
82152 Martinsried
GERMANY
Dr. Hanns-Georg Klein
Dr. Karin Mayer
Karin.Mayer@medizinische-genetik.de
Molecular analysis of Ehlers-Danlos syndrome, vascular type

Universitätsklinikum Heidelberg
Institute of Pathology Heidelberg IPH
EM-Labor
INF 224
69120 Heidelberg
GERMANY
Dr. Ingrid Haußer-Siller
Ingrid.Hausser-Siller@med.uni-heidelberg.de
Electron microscopic investigation of skin biopsy

DIAGENOS
Center for Medical Genetics
Caprivistraße 30
49076 Osnabrueck
GERMANY
Dr. Heinz Gabriel
h.gabriel@diagenos.com
Molecular diagnosis of Ehlers-Danlos syndrome, vascular type

Department of Dermatology, Venerology and Dermatooncology
Semmelweis University
Mária str. 41
1085 Budapest
HUNGARY
Prof. Sarolta Kárpáti
Dr. Marta Medvecz
Dr. Krisztina Becker
Dr. Zsòfia Hatvani
karsar@bor.sote.hu
Histology/ Immunohistochemistry of Connective tissue disorders
Electron microscopy of Connective tissue disorders

Department of Dermatology
Our Lady's Children's Hospital
Crumlin
Dublin 12
IRELAND
Dr. Alan Irvine
airvine.sec@olchc.ie
Outpatient clinic for Pediatric dermatology

Department of Specialistic and Experimental Clinical Medicine, Division of Dermatology
University of Bologna
via Massarenti 1
40138 Bologna
ITALY
Prof. Annalisa Patrizi
Dr. Iria Neri
irianeri@aosp.bo.it
Outpatient clinic for Genodermatoses or rare diseases

U.O. di Dermatologia
Dipartimento di Medicina Interna, dell'Invecchiamento e Malattie Nefrologiche
Azienda Ospedaliero Universitaria - Policlinico Sant'Orsola Malpighi
Via Massarenti 9
40138 Bologna
ITALY
Pr Annalisa Patrizi
Centre of Expertise for rare skin diseases

U.O. di Dermatologia
Ospedale Centrale di Bolzano
Via Lorenz Boehler 5
39100 Bolzano
ITALY
Pr Klaus Eisendle
dermat@asbz.it
Centre of Expertise for rare skin diseases

U.O. di Dermatologia
Azienda Ospedaliera Spedali Civili di Brescia
Piazzale Spedali Civili 1
25123 Brescia
ITALY
Dr. Andrea Brezzi
Prof. Piergiacomo Calzavara Pinton
Prof. Marina Colombi
Dr. Marina Venturini
dermatologia@spedalicivili.
brescia.it

Dipartimento di scienze dermatologiche
Via della Pergola, 58
50121 Florence
ITALY
Prof. Paolo Fabbri
fabbri@unifi.it
Outpatient clinic for Genodermatoses or rare diseases

Centro per le malattie cutanee ereditarie
Istituto di Scienze Dermatologiche - Università di Milano
Via Pace 9
20122 Milano
ITALY
Dr. Gianluca Tadini
gtadinicmce@unimi.it
Outpatient clinic for Genodermatoses or rare diseases

Servizio di Ortopedia
Ospedale Pediatrico Bambino Gesù
Via Torre di Palidoro
00060 Passoscuro (RM)
ITALY
Dr Gaetano Pagnotta
gaetano.pagotta@opbg.net
Ehlers-Danlos syndrome pediatric orthopedic clinic

Dipartimento Medicina Interna e Specialità Mediche - Dermatologia
Arcispedale Santa Maria Nuova di Reggio Emilia
Viale Risorgimento, 80
42100 Reggio Emilia
ITALY
Dr. Giuseppe Alberini
Dr. Vito Di Lernia
dilernia.vito@asmn.re.it
Outpatient clinic for Pediatric dermatology

Unità Operativa Semplice di Genetica Clinica
Arcispedale Santa Maria Nuova
Viale Risorgimento, 80
42100 Reggio Emilia
ITALY
Dr. ssa Livia Garavelli
garavelli.livia@asmn.re.it
Outpatient clinic for Genodermatoses or rare diseases

Medical Genetic Unit
Bambino Gesù Children's Hospital
Piazza S. Onofrio, 4
00165 Rome
ITALY
Dr. Maria Cristina Digilio
digilio@opbg.net
Outpatient clinic for Genodermatoses or rare diseases

VII Division of Paediatric Dermatology
Istituto Dermopatico dell'Immacolata,
IDI-IRCCS
Via dei Monti di Creta 104
00167 Rome
ITALY
Dr. Corrado Angelo
c.angelo@idi.it
Outpatient clinic for Genodermatoses or rare diseases

U.O.C. di Dermatologia Dipartimento di Medicina Pediatrica
IRCCS Ospedale Pediatrico Bambino Gesù Piazza S. Onofrio 4
00165 Roma
ITALY
Dr May El Hachem (chief Unit of Dermatology) Dr Andrea Diociaiuti
Dr Annalisa Ciasulli
may.elhachem@opbg.net andrea.diociaiuti@opbg.net Managing multidisciplinary approaches for Epidermolysis bullosa, Ichthyosis, Incontinentia Pigmenti and Vascular anomalies. Also for other several disorders, e.g. Ehlers-Danlos, NF, Ectodermal dysplasia etc

U.O.C. Laboratorio di Genetica MedicaSapienza Università di Roma
Azienda Ospedaliera S. Camillo-Forlanini
Circonvallazione Gianicolense 87
00152 Roma
ITALY
Dr Marco Castori
Dr Silvia Majore
geneticamedica@scf.gov.it
Hereditary connective tissue disorders clinic

Ambulatorio delle Ipermobilità Articolari
Policlinico Umberto IViale del Policlinico Umberto I 155
00161 Roma
ITALY
Dr Filippo Camerota
filippo.camerota@uniroma1.it
Centre of Expertise for Ehlers-Danlos syndrome, hypermobility type

ARS RADIOLOGICA s.r.l.
Piazza N. Sauro, 6
73049 Ruffano (Lecce)
ITALY
Dr. Alessandro Castriota Scanderbeg
scanderbeg@arsradiologica.it
Radiologic diagnosis of genetic diseases

S.C. Dermatologia 2 - Ambulatorio Malattie Rare
Dipartimento di Oncologia ed Ematologia
A.O. Città della Salute e della Scienza di Torino - Presidio San Lazzaro
Via Cherasco 23
10126 Torino
ITALY
Pr Maria Grazia BERNENGO
Centre of Expertise for rare skin diseases

Centro di Coordinamento Regionale per le Malattie Rare
Azienda Ospedaliero-Universitaria "Santa Maria della Misericordia" di Udine
Piazzale Santa Maria della Misericordia 15
33100 Udine
ITALY
Dr Bruno Bembi
bembi.bruno@aoud.sanita.fvg.it
Regional centre of expertise for osteo-connective diseases

U.O. di Dermatologia
Azienda Ospedaliera Spedali Civili di Brescia
Piazzale Spedali Civili 1
25123 Brescia
ITALY
Dr. Andrea Brezzi
Prof. Piergiacomo Calzavara Pinton
Prof. Marina Colombi
Dr. Marina Venturini
dermatologia@spedalicivili.
brescia.it

Centro per le malattie cutanee ereditarie
Istituto di Scienze Dermatologiche - Università di Milano
Via Pace 9
20122 Milano
ITALY
Dr. Gianluca Tadini
gtadinicmce@unimi.it
Histology/ Immunohistochemistry of Connective tissue disorders
Electron microscopy of Connective tissue disorders

Dipartimento Medicina Interna e Specialità Mediche - Dermatologia
Arcispedale Santa Maria Nuova di Reggio Emilia
Viale Risorgimento, 80
42100 Reggio Emilia
ITALY
Dr. Giuseppe Alberini
Dr. Vito Di Lernia
dilernia.vito@asmn.re.it
Histology/ Immunohistochemistry of Ehlers Danlos syndrome

Laboratory of Molecular and Cell Biology
Istituto Dermopatico dell'Immacolata, IDI-IRCCS
Via Monti di Creta 104
00167 Rome
ITALY
Prof. Giovanna Zambruno
Dr. Daniele Castiglia
d.castiglia@idi.it
Histology/ Immunohistochemistry of Connective tissue disorders
Electron microscopy of Connective tissue disorders

Department of Biomedical Sciences and Biotechnology, Division of Biology and Genetics
University of Brescia
Via Europa 11
25123 Brescia
ITALY
Prof. Marina Colombi
colombi@med.unibs.it
Project title: Identification of cellular markers for arthrochalasic Ehlers-Danlos syndrome skin fibroblasts

TRS kompetansesenter for sjeldne diagnoser
Sunnaas Sykehus HF
Bjørnemyrveien 11
1450 Nesoddtangen
NORWAY
Mr Per Frydenborg
trs@sunnaas.no
TRS National Resource centre for Rare Disorders

Unidad de enfermedades de baja prevalencia
Servicio de Medicina Interna
Hospital General Universitario de Alicante
Calle Pintor Baez, 12
03010 Alicante
SPAIN
Dr Rosario SÁNCHEZ MARTÍNEZ
soriano_cec@gva.es
Ehlers-Danlos syndrome clinic

Servicio de Dermatología
Complejo Hospitalario Universitario A Coruña
Calle As Xubias, 84
15006 A Coruna
SPAIN
Dr Eduardo Fonseca Capdevila
Rare diseases of the skin clinic

Service de Dermatologie et Vénéréologie
CHUV / FBM - UNIL
Hôpital de Beaumont
1011 Lausanne
SUISSE
Prof. Daniel Hohl
Sphie Mercier
Sophie.Mercier@chuv.ch
Outpatient clinic for Genodermatoses or rare diseases
Outpatient clinic for Pediatric dermatology

Department of Dermatology
University Medical Centre Groningen
Hanzeplein 1
Groningen
9700 RB
THE NETHERLANDS
Prof. Marcel F. Jonkman
m.f.jonkman@derm.umcg.nl
Outpatient clinic for Genodermatoses or rare diseases

Department of Dermatology
Birmingham Children's Hospital
Steelhouse Lane
Birmingham B4 6NH
UNITED KINGDOM
Pr Celia Moss
Rare genetic skin disorders and tertiary dermatology clinic

Children's Outpatient Unit - Chaucer Unit
The North West London Hospitals NHS Trust
Northwick Park Hospital
Watford Road
Harrow HA1 3UJ
UNITED KINGDOM
Dr Anthony Vandersteen
Ehlers-Danlos Syndrome NHS Specialised Service (Children)

Manchester Regional Genetics Service,Genetic Medicine, 6th Floor
Central Manchester University Hospitals NHS Foundation Trust
St Mary's Hospital
Oxford Road
Manchester M13 9WL
UNITED KINGDOM
Dr Fiona Lalloo
Manchester Centre for Genomic Medicine

Ehlers-Danlos Syndrome (EDS) National Diagnostic Service - Sheffield Clinic
Sheffield Children's NHS Foundation Trust
The Sheffield Children's Hospital
Western Bank
Sheffield S10 2TH
UNITED KINGDOM
Dr Glenda SOBEY
Ehlers-Danlos Syndrome NHS Specialised Service