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2016 Course

The 2016 Course on Rare Skin Diseases will be held in Zagreb, Croatia on September 22, 2016.

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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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

To register, please contact marie.guillou@fondation-r-touraine.org

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2011 meeting

Preliminary 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

    To register, please contact: marie.guillou@fondation-r-touraine.org
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Apply to an educationnal grant to participate in the 2016 Course on Rare Skin Diseases!

Who can apply to the educational grant?
Specialists and paramedics responsible for genodermatoses & rare skin disorders consultations can apply to the educational grant.

How can I apply to the educational grant?
To apply to the educational grant, you are invited to fill in the application form.
You will have to provide your contact information and present a project focused on health care and social support of patients with severe and rare skin diseases. Please note that the research projects are not eligible.

What is covered by the educational grant?
These grants will cover:

  • the registration to the meeting
  • the return-ticket on economic fare to Zagreb*
  • 2 nights in Zagreb (September 21 and 22) * in accordance with EU requirements, the ticket will be reimbursed once the organizing committee has received your receipt of payment and the original boarding pass for each flight.

How many educational grants will be awarded?
10 grants will be awarded.

When is the deadline to apply for the educational grant?
The deadline to apply for the educational grant is August 19th.
Where do I send my application?
Please send your application by email to marie.guillou@fondation-r-touraine.org.

How will be the applications selected?
The applications will be selected by the organizing committee of the 2016 training course according to the following criteria:

  • the aim of the project: Please note that research projects are not eligible. The project should aim at improving health care and social support for patients with severe and rare skin diseases. The project has to take into account the daily needs of patients and of the health care providers (5 points)
  • the general context: the project should be adapted to your own country social and cultural context (5 points)
  • the feasibility of the project: the project should be very practical and feasible with the available resources (5 points)
  • the links with the main stakeholders and organizations who could help improving health care social support for rare skin diseases patients such as NGO or/and associations of patients, public health authorities, specialists and paramedics, general practitioners, other teams and centers in you country or outside you country (5 points)

When will I receive information regarding my application?
If you do not have receive any acknowledgment receipt email by September 1st, please:

  • send an email to marie.guillou@fondation-r-touraine.org
  • call 33 1 53 72 20 80.

Click here to download the application form.

The 2016 meeting will take place on Septembre 22 2016 in Zagreb, Croatia at the Hotel Westin (Krsnjavoga 1, Zagreb, 10000, Croatia).

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To register, please contact marie.guillou@fondation-r-touraine.org

http://www.westinzagreb.com/

Meet Croatia, its people, culture and nature!

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http://www.discovercroatia.eu/

Explore the capital city Zagreb!

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http://www.infozagreb.hr/

The Westin Zagreb Hotel is centrally located in the very heart of Zagreb. Special rate apply for the participants in the 2016 Course on Genodermatoses & Rare Skin Disorders.

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Please send us an email.
Westin Zagreb Hotel Address:
http://www.westinzagreb.com/
Krsnjavoga 1 · Zagreb, 10000 · Croatia

The Debra International Congress will be held from September 22 to September 25, 2016 under the auspices of President of the Republic of Croatia Kolinda Grabar Kitarović
Minister of Health Dario Nakić and Mayor Milan Bandić.

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