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Meetings and events

2014

November 6-7: Towards a network of excellence for rare skin diseases in the North Africa and the wider Middle-East area - Beirut - Lebanon
The workshop is co-organized by:

  • Saint George Hospital University Medical Center, Beirut, Lebanon
  • Unité de Génétique Médicale, Université Saint-Joseph,Beirut, Lebanon
  • MAGEC, the French Expertise Centre on Rare Skin of the Hôpital Necker-Enfants Malades
  • the Genodermatoses Network thanks to the support of the EADV. The programme will be available soon.

October 30-31: Highlight on cutis laxa, ectodermal dysplasia, incontinentia pigmenti and specific common problems (pain, pruritus, nutrition) - Paris - France
The workshop is organized by:

October 10: Second European Workshop on European Reference Network recommendations and criteria in rare skin diseases - Amsterdam - Netherlands
The workshop is organized by:
-* the Genodermatoses & Rare Skin Disorders Network thanks to the support of the EADV.
Programme Overview

  • Update on the EU policy on European Reference Networks
  • New structure of the ERN for Genodermatoses & Rare Skin Disorders according to the Commission Delegated Decision 10.3.2014 setting out criteria and conditions that European Reference Networks and healthcare providers wishing to join a European Reference Network must fulfil
  • Objectives and tasks for each ERN for Genodermatoses group
  • Update on the Genodermatoses Network activities

Learn more about the first European Workshop on ERN recommendations and criteria in rare skin diseases

June 23: Second Workshop on Icthyosis on diagnosis, pathology and clinical findings of the less common types of ichthyoses, as well as on the importance of the therapeutic education in this group of patients - Madrid - Spain
The second workshop will be held:

2013

May 31-June 1: Genodermatoses Symposium EB and Ichthyosis - Lisboa - Portugal
Click here for the programme

February 28: Rare Disease Day
Rare Disease Day is an annual, awareness-raising event co-ordinated by:

  • EURORDIS at the international level
  • National Alliances of Rare Disease Patient Organisations at the national level

View and share the official video of Rare Disease Day.
More information on Rare Disease Day website.


This year’s slogan is Rare Disorders without borders!

Genodermatoses & Rare Skin Disorders Network fully supports this action. Get involved too!

2012

February 29: Rare Disease Day - Brusssels - Belgium
At the European level, Rare Disease Day 2012 highlighted rare diseases as a model of EU solidarity in today’s crisis-stricken Europe.

The symposium is co-organized by:

The TAG network has been presented by Prof. Dubertret, President of Fondation René Touraine and Ms. Zmazek, President of Debra Croatia.
The presentation can be viewed online.

2011

October 13-14-15: Genodermatoses & Rare Skin Disorders Network Conference EB, ichtyosis - Paris - France
Click here for the programme

November 12-13: Together Against Genodermatoses Seminar EB, ectodermal dysplasias, incontinentia pigmenti, neurofibromatosis - Nicosia - Cyprus
Click here for the programme

February 28: Rare Disease Day
Click here

2010

October 22-23: Genodermatoses & Rare Skin Disorders Network Conference EB, ichthyosis, palmoplantar keratoderma,neurofibromatosis, xeroderma pigmentosum, incontinentia pigmenti, hypohidrotic ectodermal dysplasias - Roma - Italy
Click here for the programme

Conference UNITI (Italian Union of Ichthyosis) - Roma - Italy
Click here for the programme

2009

April 3-4: The first regional symposium on Hereditary Epidermolysis Bullosa - Zagreb - Croatia
Click here for the programme

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