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Need more information?

If you are interested in the study, if anything is unclear or if you have any questions about the EDELIFE study, please contact the doctor responsible for the study in your country or the Coordinating Investigator, Prof Schneider. They will then share more information with you on the study, including, should you wish to, the full Information Sheet that details the whole study.

You can also contact your local Patient Association or EDIN, the international patient association.

Study doctors

France

Paris
Prof. Dr. med Christine Bodemer
Hôpital Necker Enfants Malades
149 rue des sèvres
75015 Paris
christine.bodemer@aphp.fr
+33 1 44 49 43 37

Germany

Erlangen
Professor Holm Schneider
Universitätsklinikum Erlangen
Zentrum für Ektodermale Dysplasien Erlangen
Loschgestraße 15
91054 Erlangen
www.zeder.uk-erlangen.de
holm.schneider@uk-erlangen.de
+49 9131 8533775

Germany

Leipzig
Prof. Dr. med Holger Stepan
Universitaetsklinikum Leipzig
Departement für Frauen und Kindermedizin
Liebigstrasse 20a
04103 Leipzig
holger.stepan@medizin.uni-leipzig.de
+49 3419723595

Italy

Milano
Prof. Dr. med Riccardo Cavalli
IRCCS Ca' Granda Ospedale Policlinico
Dermatologia Pediatrica
Via Pace 9
20122 Milano
riccardo.cavalli@policlinico.mi.it
+39 0255035355

Spain

Murcia
Dra. med Encarnación Guillén Navarro
Hospital Clinico Universitario
Virgen de la Arixacca
3ª planta, Pasillo B, Calle Campo nº 12
30120 El Palmar
guillen.encarna@gmail.com
+34 968 92 94 29

United Kingdom

Cardiff
Prof. Dr. med Angus Clarke
University Hospital of Wales Cardiff and Vale
University Local Health
Board Health
Park Way CF14 - 4WX
clarkeaj@cardiff.ac.uk
+44 2920 742577

USA

San Francisco
Dr. med Mary E Norton
University of California
Department of Ob, Gyn & RS, Box 0132
490 Illinois Street, Floor 10, Room 102L
CA 94143
mary.norton@ucsf.edu
+1 415 353 7865

USA

St Louis
Dr. med Dorothy Katherine Grange
Washington University
660 South Euclid Ave
St. Louis, MO 63110
grangedk@wustl.edu
+1 314 454 6093

Coordinating Investigator

Prof. Dr. med. Holm Schneider
holm.schneider@uk-erlangen.de
+49 91 3185 33775

Patient associations

France

Association Française Des Dysplasies Ectodermiques
afde.net
For contact
AFDE contact page
virginie@afde.net

Spain

Asociación de Afectados por Displasia Ectodérmica
www.displasiaectodermica.org
infos@displasiaectodermica.org

USA

National Foundation for Ectodermal Dysplasias
www.nfed.org
mary@nfed.org
For other international patient groups outside of these countries, please check :
edinetwork.org/international-groups
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