THE GENODERMATOSES NETWORK
WISHES YOU
A HAPPY NEW YEAR

In 2011, thanks to your involvement, FONDATION RENE TOURAINE, has contributed to improve health care and social support for patients suffering from severe and rare genetic skin diseases in European, Mediterranean and Middle-Eastern countries.

With the GENODERMATOSES NETWORK, FONDATION RENE TOURAINE has achieved the following actions:

• training sessions for nurses, specialists and patient representatives
• a meeting with the pharmaceutical and medical devices companies willing to improve patient care
• a yearly working session getting together 145 participants (specialists, nurses, associations of patients, scientists, public health authorities) coming from 25 countries
• 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.

In 2012, thanks to your support, FONDATION RENE TOURAINE will:

• set up a new website valuing the main actions and partners of the GENODERMATOSES NETWORK
• develop 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
• organize a group of industries willing to improve patient care
• get together the GENODERMATOSES NETWORK partners

La réunion de travail Together Against Genodermatoses 2011

a eu lieu

du 13 au 15 octobre 2011

• les dermatologues, les sociétés de dermatologie / dermatologie pédiatrique
• les responsables de santé publique
• les ministères de la santé et des affaires sociales
• les associations de patients
• et l'ensemble des acteurs de la prise en charge des patients et de leur famille.