AUSTRIA

Department of Dermatology
Innsbruck Medical University
Anichstr. 35                                        
Innsbruck
Austria
A6020
Prof. Matthias Schmuth
Dr. Robert Gruber
r.gruber@uibk.ac.at
Outpatient clinic for Genodermatoses or rare diseases

Divison of Biochemical and Paediatric Genetics
University Children’s Hospital Vienna
Währinger Gürtel 18-20                                                                   
1090 Vienna                
Austria                        
Prof. Olaf Bodamer
olaf.bodamer@meduniwien.ac.at   
Outpatient clinic for Genodermatoses or rare diseases (for Acro-dermato-ungual-lacrimal-tooth syndrome, Ankyloblepharon-ectodermal defects-cleft lip and palate syndrome Arthrogryposis and ectodermal dysplasia, Cartilage-hair hypoplasia syndrome, Cleft lip/palate-ectodermal dysplasia syndrome, Congenital insensitivity to pain with anhidrosis, Ectodermal dysplasia, with ectrodactyly and macular dystrophy, Ectrodactyly-ectodermal dysplasia-cleft lip/palate syndrome, Hallerman-Streiff syndrome, Incontinentia pigmenti, Johanson-Blizzard syndrome, Limb-mammary syndrome, Marshall syndrome, Naegeli syndrome, Oculodentodigital displasia, Odontoonychodermal dysplasia, Odontotrichomelic syndrome, Onychotrichodysplasia and neutropenia, Orofaciodigital syndrome, type I, Rapp-Hodgkin syndrome, Rothmund-Thomson syndrome, Sabinas brittle hair and mental deficiency syndrome, Scalp-ear-nipple syndrome, Schopf-Schulz-Passarge syndrome, and Ulnar mammary syndrome).

CZECH REPUBLIC

Department of Pediatric Dermatology the 1st Pediatric Clinic
University Hospital Brno
Cernopolní 9                                                                           
625 00 Brno      
Czech Republic                    
Dr. Hana Buckova
hbuckov@fnbrno.cz
Outpatient clinic for pediatric dermatology (Hallerman-Streiff syndrome, Hidrotic ectodermal dysplasia, hypohidrotic ectodermal dysplasia, hypohidrotic ectodermal dysplasia with immune deficiency, Incontinentia pigmenti, and Rothmund-Thomson syndrome)

FRANCE

Department of Medical Genetics
Purpan Hospital
Pavillon Lefebvre
Toulouse 
FRANCE
31024 
Prof. Alain Hovnanian
alain.hovnanian@toulouse.inserm.fr
Outpatient clinic for Genodermatoses or rare diseases (for Dyskeratosis congenita, Ectrodactyly-ectodermal dysplasia-cleft lip/palate syndrome, Incontinentia pigmenti, and Rapp-Hodgkin syndrome)

Department of Dermatology
University hospital
1 pl alexis Ricordeau                                                                            
Nantes                
France                         
44093
Prof. JF Stalder
Dr. Sébastien Barbarot         
sebastien.barbarot@chu-nantes.fr
Outpatient clinic for Genodermatoses or rare diseases
Outpatient clinic for Pediatric dermatology

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

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

Service de Dermatologie
Hôpital Archet 2
BP 3079
06202 Nice Cedex
France
Prof. Jean Paul Ortonne
Prof. Jean Philippe Lacour
lacour@unice.fr
Outpatient clinic for Pediatric dermatology (for Dyskeratosis congenita, Ectodermal dysplasia, pure hair and nail type, Focal dermal hypoplasia syndrome, Hallerman-Streiff syndrome, Hidrotic ectodermal dysplasia, Hypohidrotic ectodermal dysplasia, Incontinentia pigmenti, and Rothmund-Thomson syndrome)

GERMANY

Center for Human Genetics Freiburg
Heinrich-von-Stephan-Str. 5
Freiburg
79100 Germany
Prof. Jürgen Kohlhase 
jkohlhase@humangenetik-freiburg.de 
Outpatient clinic for Genodermatoses or rare diseases (Rothmund-Thomson syndrome, Ulnar-mammary syndrome)

Department of Dermatology
University Hospital
Von-Esmarch-Str. 58
Muenster
Germany
48149
Prof. Heiko Traupe
Dr. Vinzenz Oji
Vinzenz.oji@ukmuenster.de
Outpatient clinic for Incontinentia pigmenti
Outpatient clinic for Rothmund-Thomson syndrome
Outpatient clinic for Pediatric dermatology (for Incontinentia pigmenti and Rothmund-Thomson syndrome)

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

Hautklinik am Universitätsklinikum Freiburg
Hauptstraße 7
79104 Freiburg
PD Dr. Markus Braun-Falco
braun-falco@haut.ukl.uni-freiburg.de
Outpatient clinic for genodermatoses and rare skin diseases
Outpatient clinic for Pediatric Dermatology

Tomesa Fachklinik Bad Salzschlirf
Riedstr. 18
36361 Bad Salzschlirf
Dr. M.-L. Preil
preil@tomesa.de
Rehabilitation and outpatient clinic for genodermatoses and rare skin diseases
Rehabilitation and outpatient clinic for Pediatric Dermatology

HUNGARY

Dept. of Dermatology, Venerology and Dermatooncology
Semmelweis University
Mária str. 41
Budapest
H-1085 Hungary
Prof Sarolta Kárpáti
Dr. Marta Medvecz-Csikós 
csimar@bor.sote.hu 
Outpatient clinic for Genodermatoses or rare diseases (Focal dermal hypoplasia, Hypohidrotic ectodermal dysplasia, and Incontinentia pigmenti)
Outpatient clinic for Pediatric Dermatology (Focal dermal hypoplasia, Hypohidrotic ectodermal dysplasia, and Incontinentia pigmenti)

IRELAND

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

ITALY

ARS RADIOLOGICA s.r.l.
Piazza N. Sauro, 6
Ruffano (LECCE)
73049 ITALY
Dr. Alessandro Castriota Scanderbeg 
scanderbeg@arsradiologica.com 
Radiologic diagnosis of genetic diseases (Acro-dermato-ungual-lacrimal-tooth syndrome, Ankyloblepharon-ectodermal defects-cleft lip and palate syndrome, Arthrogryposis and ectodermal dysplasia, Autoimmune polyendocrinopathy-candidiasis-ectodermal dystrophy syndrome, Cartilage-hair hypoplasia syndrome, Cleft lip/palate-ectodermal dysplasia sindrome, Congenital insensitivity to pain with anhidrosis, Cranioectodermal syndrome, Ectrodactyly-ectodermal dysplasia-cleft lip/palate syndrome, Ellis-van Creveld syndrome, Focal dermal hypoplasia syndrome, Growth retardation-alopecia-pseudoanodontia-optic atrophy, Hallerman-Streiff syndrome, Incontinentia pigmenti, Johanson-Blizzard syndrome, Johnson neuroectodermal syndrome, Limb-mammary syndrome, Mucoepithelial dysplasia, hereditary, Marshall syndrome, Oculodentodigital displasia, Odontoonychodermal dysplasia, Odontotrichomelic syndrome, Onychotrichodysplasia and neutropenia, Orofaciodigital syndrome type I, Rothmund-Thomson syndrome, Taurodontia, absent teeth and sparse hair, Trichodental dysplasia, Trichodentoosseous syndrome, Ulnar mammary syndrome, and Weyer acrofacial dysostosis)

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

Department of Specialistic and Experimental Clinical Medicine, Division of Dermatology
University of Bologna
via Massarenti 1
Bologna
40138 Italy
Prof. Annalisa Patrizi
Dr. Iria Neri 
irianeri@aosp.bo.it 
Outpatient clinic for Genodermatoses or rare diseases (Autoimmune polyendocrinopathy-candiasis-ectodermal dystrophy syndrome, Cleft lip/palate-ectodermal dysplasia syndrome, Clouston syndrome, Dyskeratosis congenita, Ectrodactyly-ectodermal dysplasia-cleft lip/palate syndrome, Focal dermal hypoplasia syndrome, Incontinentia pigmenti, Orofaciodigital syndrome type I, Rapp-Hodgkin syndrome, Rothmund-Thomson syndrome, Trichodental dysplasia)

Dipartimento di scienze dermatologiche
Via della Pergola, 58
Florence
50121 Italy
Prof. Paolo Fabbri
fabbri@unifi.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 (for Ectrodactyly-ectodermal dysplasia-cleft lip/palate sindrome and Incontinentia pigmenti)

Neurology Unit
Bambino Gesù Children’s Hospital
Piazza S. Onofrio, 4                                                   
00165 Rome
Italy
Prof. Federico Vigevano
vigevano@opbg.net
Outpatient clinic for Epileptic disorders (for Incontinentia Pigmenti and Johnson neuroectodermal dysplasia)

Unità Operativa Semplice di Genetica Clinica
Arcispedale Santa Maria Nuova di Reggio Emilia
Viale Risorgimento, 80
42100 Reggio Emilia
Italy
Dr. Livia Garavelli
garavelli.livia@asmn.re.it
Outpatient clinic for Genodermatoses or rare diseases (Ankyloblepharon-ectodermal defects-cleft lip and palate syndrome, Ectrodactyly-ectodermal dysplasia-cleft lip/palate syndrome, and Incontinentia Pigmenti)

U.O. Riabilitazione Infantile Terzo Livello
Arcispedale Santa Maria Nuova
Viale Risorgimento 80
42100 Reggio Emilia
Italy
Prof. Adriano Ferrari
Dr. Silvia Sassi
sassi.silvia@asmn.re.it
Outpatient clinic for Rehabilitative clinic (for Incontinentia pigmenti)

VII Division of Paediatric Dermatology
Istituto Dermopatico dell’Immacolata, IDI-IRCCS
Via dei Monti di Creta 104                                                                               
00167 Rome                  
Italy                            
Dr. Mauro Paradisi
Dr. Corrado Angelo
c.angelo@idi.it
Outpatient clinic for Genodermatoses or rare diseases (for Ankyloblepharon-ectodermal defects-cleft lip and palate syndrome, Cleft lip/palate-ectodermal dysplasia syndrome, Curly hair-ankyloblepharon-nail dysplasia syndrome, Dyskeratosis congenita, Ectrodactyly-ectodermal dysplasia-cleft lip/palate sindrome, Focal dermal hypoplasia sindrome, Growth retardation-alopecia-pseudoanodontia-optic atrophy, Hidrotic ectodermal displasia, Hypohidrotic ectodermal displasia, Incontinentia pigmenti, Rapp-Hodgkin sindrome, Rothmund-Thomson sindrome, and Schopf-Schulz-Passarge sindrome)

SPAIN

Department of Medical Genetics
Fundacion Jimenez Diaz
Av / Reyes catolicos nº 2                                           
28040 Madrid
Spain
Dr. Carmen AYUSO
Dr. Isabel LORDA  
ilorda@fjd.es
Outpatient clinic for Genodermatoses or rare diseases (for Ankyloblepharon-ectodermal defects-cleft lip and palate syndrome, Ellis-van Creveld syndrome, Focal dermal hypoplasia syndrome, Growth retardation-alopecia-pseudoanodontia-optic atrophy, and Incontinentia pigmenti).

Serviço Cirurgia Maxilo-Facial
Hospitais Universidade Coimbra
Av. Bissaya Barreto
Coimbra
Portugal
3000-075 Coimbra
Dr. João Pedro Marcelino 
j.p.marcelino@sapo.pt 
Outpatient clinic for Ectodermal Dysplasias (Ankyloblepharon-ectodermal defects-cleft lip and palate syndrome, Cleft lip/palate-ectodermal dysplasia syndrome, Cranioectodermal syndrome, Ectrodactyly-ectodermal dysplasia-cleft lip/palate syndrome, and Orofaciodigital syndrome, type I)

SWEDEN

Department of Dermatology - Genodermatosis Centre
Uppsala University Hospital
Uppsala              
Sweden                       
SE-751 85
Prof. Anders Vahlquist
Anders.Vahlquist@medsci.uu.se
Outpatient clinic for Genodermatoses or rare diseases (for Hidrotic ectodermal dysplasia, Incontinentia pigmenti and Rapp-Hodgkin syndrome)

SWITZERLAND

Service de Dermatologie et Vénéréologie
CHUV / FBM - UNIL
Hôpital de Beaumont 
Lausanne 
Suisse 
1011
Prof. Daniel Hohl
Pascale Sellem
mailto:pascale.sellem@chuv.ch
Outpatient clinic for Genodermatoses or rare diseases
Outpatient clinic for Pediatric dermatology

THE NETHERLANDS

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

UNITED KINGDOM

Centre Cutaneous Research
Barts/London SMD/QMUL
4 Newark St                                                                              
London E1 2AT
UK 
Dr. Edel O’Toole
e.a.o’toole@qmul.ac.uk
Outpatient clinic for Genodermatoses or rare diseases (for Hidrotic ectodermal dysplasia)

Genetic Skin Disease Group
St John’s Institute of Dermatology
St Thomas’ Hospital  Lambeth Palace Road                  
London SE1 7EH
UK
Prof. John McGrath
Dr. Jemima Mellerio
jemima.mellerio@kcl.ac.uk
Outpatient clinic for genodermatoses or rare diseases (for Acro-dermato-ungual-lacrimal-tooth syndrome, Ankyloblepharon-ectodermal defects-cleft lip and palate syndrome, Cleft lip/palate-ectodermal dysplasia syndrome, Curly hair-ankyloblepharon-nail dysplasia syndrome, Ectodermal dysplasia, skin fragility syndrome, Ectrodactyly-ectodermal dysplasia-cleft lip/palate syndrome, Focal dermal hypoplasia syndrome, Hidrotic ectodermal dysplasia, Hypohidrotic ectodermal dysplasia, Limb-mammary syndrome, Mucoepithelial dysplasia, Naegeli syndrome, Rapp-Hodgkin syndrome, and Schopf-Schulz-Passarge syndrome).
Outpatient clinic for pediatric dermatology (for Acro-dermato-ungual-lacrimal-tooth syndrome, Ankyloblepharon-ectodermal defects-cleft lip and palate syndrome, Cleft lip/palate-ectodermal dysplasia syndrome, Dyskeratosis congenita, Ectodermal dysplasia, skin fragility syndrome, Ectrodactyly-ectodermal dysplasia-cleft lip/palate syndrome, Focal dermal hypoplasia syndrome,  Hidrotic ectodermal dysplasia, Hypohidrotic ectodermal dysplasia, Incontinentia pigmenti, Mucoepithelial dysplasia, Rapp-Hodgkin syndrome, and Rothmund-Thomson syndrome)