Concept
Ectodermal dysplasias (ED) are rare and orphan genetic conditions affecting the development and/or homeostasis of two or more ectodermal derivatives, including hair, teeth, nails, and certain glands (new definition, Wright et al, 2019). ED group gather around 100 diseases. New definition and classification as well as management and new perspectives in care should be shared with the clinical and research community. For that reason, we propose a specific training course during the 8th international conference on ED.
Aim
Inform and train participants in basic and practical aspects on Ectodermal Dysplasias (ED) and Incontinentia Pigmenti (IP) with specific focus on recent research update research and innovative care.
Residents in dermatology, ophthalmology, dentistry, surgery, neurology, general practice, pediatrics, researchers, and patient representatives
Morning: participation to the conference with other specialists (with feedback on their observation and key learnings of the day)
Afternoon: X Classes on ED and IP. Real life situations and ill-defined problems will be proposed. If the course is restrained by the pandemic situation, it will be made available as a webinar.
To register please fill the application form here until 2 May 2022.
For 20-25 selected ERN participants the training workshop is free of charge. Travel (max Euro 250) and hotel expenses (max 2 nights) will be reimbursed for the selected ERN participants. Lunches and coffee breaks will be provided onsite for all participants.
Affiliated to an ERN-Full Member or Affiliated Partner institution.
The French ED association (AFDE) and EDIN (ED International Network) that gather the ED national associations of several countries are members or ERN-skin
Necker-Enfants Malades Hospital is Health Care Provider of ERN-skin that is coordinated by Pr C Bodemer (Head of the Dpt of Dermatology in Necker-Enfants Malades Hospital, Paris). S Hadj-Rabia is a member of the Dpt of Dermatology (Necker-Enfants Malades Hospital).
Many of the speakers are members of ERNs-skin, ERN-eye and ERN-cranio
The organizer together with one member of the WP17 Scientific Evaluation Committee will select the most appropriate workshop participants based on their motivation and future implication in ED and IP care.
All registered participants will be informed if they are selected to attend this training course before 30 April 2022.
Workshops will run in English.
Necker-Enfants Malades Hospital, 149 rue de Sèvres 75015, Paris France
If you have specific questions, please write to the workshop organizer:
virginie@afde.net (president of the French ED patient association)
smail.hadj@inserm.fr (ERN-Skin, Dpt of Dermatology, Necker-Enfants Malades Hospital)
For general inquiries about the workshops in the ERN RD Support and Training Program please write to: RareEndoERN@lumc.nl