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.