2011 Together Against Genodermatoses meeting



The 2011 Together Against Genodermatoses meeting in October 2011
at Necker – Enfants Malades Hospital in Paris

President Maggie Aldwin used the occasion to briefly talk to the delegates about the formation of eni. It was relevant for eni to have a presence because the agenda included health care, genetic counselling and therapeutic education for patients with ichthyosis. At this meeting Maggie also made contact with Marie-Cécile Verly, the President of the French ichthyosis association.

BoD meeting in Rome 2011

The eni Board of Directors and Geske who met in Rome on 22nd October 2011
The picture was used on a thank you card to the European Union of Dentist / German Group for a donation of 1.500 €.
Discussion included the setting up of an Ichthyosis Community through Eurordis Online Communities platform http://www.rarediseasecommunities.org/en the creation of an eni ‘flyer’, how to promote more interchange through the existing mailing list and expanding a questionnaire on treatments of ichthyosis etc. which is currently being developed by the German SI e.V.

Wellchild Award 2011, Youngster Meeting and Eurordis Federation of Networks


UK 2011 WellChild Awards for ISG

Professor Celia Moss was proposed by the ISG for the doctors category at the prestigious UK 2011 WellChild Awards in recognition of her work with ichthyosis patients and for her invaluable contribution on the ISG Medical Advisory Board these last 15 years - and she won! Maggie and Mandy attended the event with Celia and was snapped at the VIP reception talking to Prince Harry (no less) who is the Wellchild patron.