The Ectodermal Dysplasia International Network (EDIN) organisations each have their own Medical Advisory Boards, together with extensive lists of medical professionals who have knowledge and understanding of the Ectodermal Dysplasias.
Some of these professionals are listed below, but should you wish to have contact with these or any other professionals known to the EDIN organisations, please email or call the Ectodermal Dysplasia organisation in your country who will be pleased to help you all they can and put you in touch.
United Kingdom
Professor Angus J. Clarke, DM, FRCP, FRCPCH
Professor and Honorary Consultant in Clinical Genetics
Mr. Colin E. Willoughby, BSc. (Hons), MBChB (Hons), MD FRCOphth
Ophthalmic Surgeon, Senior Lecturer, Consultant Ophthalmologist
Sweden
Chief dentist, PhD: Johanna Norderyd
National Oral Disability Centre
Senior Consultant, specialist in prosthetic dentistry: Pernilla Holmberg
National Oral Disability Centre
Karin Högkil, chief dentist & coordinator of ED-team (multidisciplinary)
EastmaninstitutetPedodonti
Sandra Götberg, pediatrician
Astrid Lindgrens Barnsjukhus, Jakobsberg BUMM
Marianne Lillehagen, Clinic Director, Specialist Dentist in pediatric dentistry
Mun-H Center, Gothenburg
Veronica Wingstedt de Flon, Manager
Swedish National Center for Rare Diseases, NFSD, Umbrella organization
Denmark
Ms. Jette Daugard
Odontology Knowledge Centre, Department Of Oral and Maxilliofacial Surgery
Dr Ulrikke Lei, chief consultant, Dermatology and Allergy, research focus on quality of life. Gentofte Hospital
Mette Mogensen PhD, Chief Consultant, associate professor, Bisbebjerg hospital
Dr Anette Bygum, Professor, Head of Research, DMSci, KI, Dermato-venerology, Odense Hospital
Dr. Jens Michael Hertz, professor, chief physician, KI, Clinical Genetics, University of Southern Denmark,
Tine Vestergaard, Clinical Associate Professor, KI, Dermato-venerology, University of Southern Denmark
Mette Sommerlund PhD, MD, consultant, associate professor, Århus Hospital, Department of Dermatology, Århus University
Hans Gjørup PhD, Department of Oral and Maxillofacial Surgery/Odentologisk Videnscenter at Aarhus University Hospital
MD Kristine Pallesen, Dep of Dermatology at Aarhus University Hospital
Germany
PD Dr. med. dent. Katharina Bücher
Spezialistin Kinderzahnheilkunde
Prof. Dr. Dr. Siegmar Reinert
UNIVERSITÄTSKLINIKUM TÜBINGEN
Dr. med. dent. Marcel Hanisch
Fachzahnarzt für Oralchirurgie, Master of Business Administration in Medical Management (MBA)
Prof. Dr. med. Holm Schneider
Facharzt für Kinder- und Jugendmedizin
Italy
dott. Tadini CMCE
DermatologProf. Dr. Encarna Guillén-Navarro. Medical Genetics/Pediatrics. Hospital Clinico Universitario Virgen de la Arrixaca. IMIB. Universidad de Murcia. Spainia Pediatrica – Dipartimento di Medicina Interna e Specializzazioni Mediche
Spain
Prof. Dr. Encarna Guillén-Navarro
Medical Genetics/Pediatrics. Hospital Clinico Universitario Virgen de la Arrixaca. IMIB. Universidad de Murcia. Spain.