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8th International Conference on Ectodermal Dysplasias

Editorial

Dear friends and colleagues,

We are pleased to share with you this invitation about the 8th conference on Ectodermal Dysplasia.

This conference starts on the 9th June until the 11th June 2022, in Paris, France. We believe in building on everyone knowledge, experience and appetite to enhance international community strength around this rare disease.  We will meet with medical teams, scientists, patient representatives, and industrial actors. Our collaboration with so many countries will help research and clinical trials for better patient care. We are putting quality of life at the center of this conference.

In addition, students are welcome to join one full day, on the 10th June 2022, with specific courses given during the conference. Ectodermal Dysplasia is a rare disease, but not small!

The program is articulated around:

Plenary sessions around updates on Ectodermal Dysplasia (diagnosis, classification, management, updates in clinics)Review of specific manifestations, such as Ocular manifestations, mucous membranes and sweat,4 parallel workshops on the various diseases and topics, (Women, P63, Oral issues...)1 session dedicated to INCONTINENTIA PigmentiA session on dental care (updates, Pre-Implant orthodontics, special implants and preprosthetic surgery…)1 half day of training sessions with international courses for students, including a testimony from a young male carrier of Ectodermal Dysplasia.Finally, daily life session, cost of living with ED, reproductive decision-making processOf course, we will hear from Esperare and Pierre Fabre around the latest research and coming trials.

We are counting on you to join and share this invitation around you, let’s make the best out of this international gathering!

Best wishes,

The ED2022 Organisation committee

Scientific committee

Pr. Smail Hadj-Rabia

Dermatologist, Dpt of Dermatology, MAGEC-Necker Reference Centre for rare skin diseases, Hôpital Necker-Enfants Malades, Paris

Pr. Tim Wright

Professor on Pediatric Dentistry at UNC School of Dentistry

Pr. Holm Schneider

Pediatrician, neonatologist and genetic researcher, Professor at the University Hospital Erlanger, Germany

Dr Johanna Norderyd

Senior consultant, National Oral Disability Centre for Rare Disorders at the Institute for Postgraduate Dental Education in Jönköping, Sweden

Pr Marie-Cécile Manière

Professor on Paediatric Dentistry, Université de Strasbourg , France

Dr. Maranke Koster

Professor at Anatomy and Cell Biology Faculty, East Carolina University , USA

Pr Angus Clarke

Clinical genetist , Professor in the Division of Cancer and Genetics at Cardiff University, Wales and consultant in the All Wales Medical Genomics Service

Organizing committee

Virginie Counioux de Conigliano

Representative of the Ectodermal Dysplasias French Association (AFDE)

Pr. Smaïl Hadj-Rabia

Dermatologist, Dpt of Dermatology, MAGEC-Necker Reference Centre for rare skin diseases, Hôpital Necker-Enfants Malades, Paris

Pr. Marie-Cécile Manière

Professor on Paediatric Dentistry, Université de Strasbourg, France

Patient representatives

Diana Perry

Representative of the Ectodermal Society 

Ulrike Holzer

Representative of the Ectodermal Dysplasia International Network (EDIN)

José Manuel Montoya

Representative of the Ectodermal Dysplasia International Network (EDIN) 

Mary Fete

Representative of the National Foundation for Ectodermal Dysplasias

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