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2016 Cours GENOD

La session de formation sur les maladies rares de la peau aura lieu le 22 septembre 2016 à Zagreb, Croatie. Le contenu de cette rubrique est disponible en anglais uniquement, langue officielle de la réunion.

PNG - 7.8 ko

The 2016 course is organized by the Department of Dermatology and Venereology of the University Hospital Center Zagreb and the Genodermatoses & Rare Skin Disorders Network with the support of the European Academy of Dermatology and Venereology.

The steering committee is composed of

  • B. Marinovic, Head of the Dept. of Dermatology and Venereology of the University Hospital Center, Zagreb
  • C. Bodemer, Head of the Department of Dermatology, Necker Enfants Malades Hospital, Institut IMAGINE, Paris, France, Coordinator of the ERN-Skin application - President Genodermatoses & Rare Skin Diseases Network
  • M. El-Hachem, Head of the Department of Dermatology, Ospedale Pediatrico Bambino Gesù, Rome, Italy Co- coordinator of the ERN-Skin application - President-elect of Genodermatoses & Rare Skin Diseases Network
  • J. Bauer, Head of the Department of Dermatology, Paracelsus Medical University Salzburg, Austria - Co- coordinator of the ERN-Skin application - Past-President Genodermatoses & Rare Skin Diseases Network

Since 2004, the Genodermatoses & Rare Skin Disorders Network organizes meetings and training courses for the stakeholders involved in health care and social support of patients with rare and severe skin disorders.

The aims of these training events are :

  • to increase knowledge on rare skin disease diagnosis and management
  • to develop and improve skills to manage rare skin diseases
  • to encourage health care providers to adopt a multidisciplinary approach and propose dedicated services for rare skin disorders patients
  • to promote the development of national networks involving specialists, paramedics, patient groups, general practitioners, scientists, public health officials and industries
  • to promote the participation of young/new medical and paramedical teams
  • to involve and highlight the key role of patient groups
JPEG - 788.5 ko
2011 meeting

Programme

The steering committee is composed of :

  • B. Marinovic, Head of the Dept. of Dermatology and Venereology of the University Hospital Center, Zagreb
  • C. Bodemer, Head of the Department of Dermatology, Necker Enfants Malades Hospital, Institut IMAGINE, Paris, France, Coordinator of the ERN-Skin application - President Genodermatoses & Rare Skin Diseases Network
  • M. El-Hachem, Head of the Department of Dermatology, Ospedale Pediatrico Bambino Gesù, Rome, Italy Co- coordinator of the ERN-Skin application - President-elect of Genodermatoses & Rare Skin Diseases Network
  • J. Bauer, Head of the Department of Dermatology, Paracelsus Medical University Salzburg, Austria - Co- coordinator of the ERN-Skin application - Past-President Genodermatoses & Rare Skin Diseases Network

Neonates

  • 9:00-9:35 - Blistering in neonates : EB diagnosis - Jemima Mellerio
  • 9:35-10:10 - Scaling erythroderma in neonates : the diagnostic keys - Christine Bodemer

Children and adults

  • 10:10-10:45 - Ichthyoses : management - Angela Hernandez
  • 10:45-11:20 - Palmoplantar keratoderma - Ana Bakja-Konsuo

11:20-11:45 - Break

  • 11:45-12:20 - Autoimmune bullous diseases : therapeutic update - Katerina Patsatsi
  • 12:20-12:55 - Genetic testing - Johann Bauer

13:00- 14:00 - Lunch

  • 14:00- 14:35 - Cutaneous Mosaic disorders : definition and examples - Veronica Kinsler
  • 14:35-15:10 - Multidisciplinarity care : the key role of paramedics and patient groups - Branka Marinović, Slobodna Murat-Sušić
  • 15:10-15:45 - EB patients : management - Marcel Jonkman

15:45-16:15 - Break

Specific problems

  • 16:15- 16:35 - Pain - Maja Karaman
  • 16:35-16:55 - Pruritus - Mihael Skerlev

Clinical cases

  • 17:00-17:30 - Case reports

Congratulations to the successul applicants to the 2016 Educational Grant !

List of sucessful applications by country alphabetical order :

Grantee Affiliation Project
C. Prodinger Paracelsus Medical University Clinic Salzburg, Austria Improving health care of patients with rare diseases in Austria via setting up standardized questionnaires and (internal) guidelines
B. Binkova Department of Pediatric Dermatology, Faculty Hospital Brno, Czech Republic Congenital ichthyoses - a comparison of the clinical picture of molecular genetic and histopathological examination
A. Hotz Universitätsklinikum Freiburg, Institut für Humangenetik, DNA-Diagnostik, Germany Molecular genetic diagnostics in patients with genodermatoses
S. Guez EB center of Milan, Italy Administration of family/parental burden questionnaire in the Italian cohort of Milan EB Center
I. Russo Unit of Dermatology, University of Padua, Italy “Who does what ?” : a web page with practical information about diagnosis, treatment and follow up of rare skin diseases
K. Černauskiene & V. Vilkickaite Dept of Skin and Ven Diseases Hospital of LUHS Kauno klinikos, Lithuania Social support for patients with Epidermolysis bullosa and other rare skin diseases in Lithuania
P. Colbu Dermatology and Venerology, Apollonia University, Nicolina Medical Center, Saint Mary Children Hospital, Iasi, Romania Diagnosis and Management of Patients with Mastocytosis in Children in Iasi-Romania
S. Youssef Service de Dermatologie, Hôpital Militaire de Tunis, Tunisia How to improve diagnosis and management of rare hereditary palmo-plantar keratoderma (HPPK) in military institution ?
T. Burak Istanbul Medeniyet University Goztepe Research and Training Hospital, Department of Dermatology Establishment of a virtual platform for the Turkish patients with xeroderma pigmentosum and their families
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