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Genodermatoses Network
Newsletter September 2015

                                                                                                                                       




News from the Network

Free specialized consultation for genetic skin diseases in Beirut

Free specialized consultation for genetic skin diseases have been set up in Beirut thanks to dermatologists involved in the management of patients with genodermatoses.

Learn more




See and share our video about the challenges of rare skin disorders 

In this video the GNTS 2014 speakers and a patient group representative discuss the rare skin disorders challenges and the importance of European and international collaboration. Look at this video: http://www.genodermatoses-network.org/



Meet Geske Wehr, Chief Executive of the European Network for Ichthyosis (ENl)

In this interview Geske Wehr, tells us more about her involvement in the rare skin disease field, the role of ENI to support patients, the importance of European and international cooperation in the field of rare skin disorders.

Read more here...


The 2015 Training Session in Romania 

GNTS 2015, held in Iasi Romania on June 19, 2015 gathered more than 170 participants.

Learn more



Resources on rare skin disorders

Visit the new section of our website on recent publications on genodermatoses!

This new section of the Genodermatoses Network website provides a list of the most recent publications on cutis laxa, ecotdermal dysplasia, epidermolysis bullosa, ehlers-danlos, ichtyosis, incontinentia pigementi, neurofibromatosis, overgrowth syndrome and mosaicism, xeroderma pigmentosum.

Learn more


Register or update your activity on our interactive directory on rare skin diseases

Register or update your activity on our interactive directory on rare skin diseases

This directory was developed thanks to a survey conducted in 2011 among the partners of the TAG project No 2007335 under EU Health Programme 2008-2013.

Register or update the information about your team or your patient group


EU and International

Register to DEBRA International Conference & EB-CLINET 2015 

For the first time, both the EB-CLINET and DEBRA International conferences will be held at the same venue in London, from 24 – 26 September 2015. They will be run as two conferences with one shared day of the programme.

Learn more


Register for the 2nd conference on European Reference Networks

DG Health and Food Safety is organising the “2nd conference on European Reference Networks” on 8-9 October 2015 in Lisbon, Portugal. The Genodermatoses Network will present the work developed over the recent years to build a network on rare skin disorders

Learn more



Read the addendum to the 2013 recommendations on European Reference Networks for rare diseases

The Commission Expert Group on Rare Diseases adopted an addendum to the 2013 recommendations on European Reference Networks for rare diseases. This addendum aims to address two areas with particular specificities for rare diseases:

  • the necessity of patient involvement in Rare Disease European Reference Networks

  • an illustrative grouping of Rare Disease, the Rare Skin Disorders being one of the thematic networks identified by the Commission Expert Group on Rare Diseases.

Learn more





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Genodermatoses Network - Fondation René Touraine
Hôpital Saint-Louis - Pavillon Bazin
1 avenue Claude Vellefaux, F-75010 Paris
Email: marie.guillou@fondation-r-touraine.org
Tel: +33 1 53 72 20 80 /Fax: +33 1 53 72 20 61
www.genodermatose-network.org

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