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Genodermatoses Network
Newsletter April 2015

                                                                                                                                       




Events

GNTS 2015: see you in Iasi, Romania on June 19!

Develop and improve your knowledge and skills in the management of severe genodermatoses by joining GNTS 2015. The 2015 Genodermatoses Network training session will be held in Iasi, Romania on June 19.

To learn more

To register, please send us an email




Congratulations to the winners of the 2015 drawing contest!

We are really pleased that so many people from 8 different countries participated in the 1st Genodermatoses Network Drawing Contest. Thank you very much for your participation! For a first edition, it was a success and we hope next year will bring more participants!

See the winning drawings!




Meet John Dart, the COO of Debra International

In this interview, John Dart tells us more about his involvement in Debra International, the role of this organisation in supporting patients, the importance of European and international cooperation in the field of rare skin disorders. Read more here...


Resources on rare skin disorders

Learn more on rare skin disorders thanks to Therapeutics in Dermatology!

More than 60 articles on rare skin disorders including articles on collodion baby, inherited epidermolysis bullosa, incontinentia pigmenti, xeroderma pigmentosum, have been updated in Therapeutics in Dermatology, the online reference book on the management of skin diseases. Each article provides detailed information about the disease and its management.

To access Therapeutics in Dermatology, please click here.


The resources 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).

If you wish to register or update the information about your team or your patient group, please click here!


EU policy

What is a European Reference Network?

Since 2008, the Genodermatoses Network has beed identified by the European Commission as a pilot project for the European Reference Network for Rare Diseases. But what is exactly a European Reference Network ?

Learn more thanks to Eurordis


Health - EU - Highlight on the Mediterranean and the TAG project

In the newsletter 139 – Health – EU - David Lecchini (Health/Pharma/Food safety attache to the Italian Permanent Representation to the EU) provides an overview about public health cooperation in the Meditarranean area on the occasion of the Ministerial Conference organized by the Italian Presidency. This newsletter highlights the Together Against Genodermatoses Project (TAG), a pilot project initiated by the Genodermatoses Network and co-financed by the European Commission from 2008 to 2011 (TAG – 2007-335).

Read the newsletter - EU, n° 139 

More about the TAG project, towards a ERN for rare skin diseases



National initiatives

BADGEM

BADGEM (the British Association of Dermatologists, Dermatology and Genetic Medicine) is a UK-wide clinical network dedicated to rare genetic diseases of the skin. Established jointly in 2013 by the British Association of Dermatologists (BAD) and the Centre for Dermatology and Genetic Medicine (DGEM), BADGEM is currently led by Professor Irene Leigh and is governed by a steering group comprising of national experts in the UK.

Learn more on Badgem







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Genodermatoses Network - Fondation René Touraine
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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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