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.
To qualify to attend this meeting all participants were required to complete a survey on « tips and hints » developed by patients and caregivers to improve the daily life in these diseases ; on medicines, cosmetics, medical devices and other products required to improve patient care ; what experts can bring and what they expect from collaborative projects in the field of diagnosis, care, training, clinical and therapeutic research. The outcome is the development of a directory making available for the patients and the health care professionals the list of services provided in each country to patients suffering from genodermatoses.
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