eni Meeting 2009

Engage, Empathise and Enjoy

3rd Meeting of the European Network for Ichthyosis in Birmingham

 

The UK Ichthyosis Support Group (ISG) warmly welcomed eni representatives to join with UK members at the 2009 ISG Conference on the 16th and 17th May in Birmingham, and to attend an eni meeting on the 17th May.

Representatives of all European ichthyosis patients' associations were invited to both the conference and the eni meeting.

On the Sunday morning 16 representatives from 7 European support groups attended the 3rd meeting of the European Network for Ichthyosis. 

Germany, Switzerland, Belgium, Denmark, Norway, Finland and of course the UK were represented.

The main focus of the meeting was to discuss the formalization of the European Network and also to hear from a Director of MedDiscovery, Switzerland about the latest developments with a project for Netherton syndrome, and a Senior UK Director from pharmaceutical company Stiefel about Liarozole (a potential new treatment for some types of ichthyosis). 

Two members of the ISG Medical Advisory Board were invited to speak about subjects that would also be of interest to our European neighbours. Professor Andrew Finlay gave a lecture on the Dermatology Life Quality Index or DLQI. The DLQI is a simple 10-question validated questionnaire which has been used in different skin conditions and is available in 55 languages. At present the DLQI is the most frequently used instrument in studies of randomised controlled trials in dermatology. The questions are used to measure how much the skin condition has affected an individual/family over a period of time. The DLQI might be used in furthering the understanding of ichthyosis. 
See http://www.dermatology.org.uk/quality/quality-life.html for more information. The DLQI should only be used with professional guidance. 

Dr Anthony Bewley explained the value and uses of Psycho-cutaneous Medicine. Psychodermatology is a newer, emerging subspeciality of Dermatology. It includes the management of patients with primary dermatological disease (for example ichthyosis) where there is a psychiatric or psychological morbidity. 

The ISG is very proud to have hosted and be part of this important meeting. The European Network is rapidly growing, and will soon have a much bigger voice advocating for ichthyosis across Europe. 

Birmingham was a very fruitful meeting. Thank you to the British ISG.