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


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)

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


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


PD Dr. med. dent. Katharina Bücher
Spezialistin Kinderzahnheilkunde

Prof. Dr. Dr. Siegmar Reinert

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


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


Prof. Dr. Encarna Guillén-Navarro
Medical Genetics/Pediatrics. Hospital Clinico Universitario Virgen de la Arrixaca. IMIB. Universidad de Murcia. Spain.