The TAG network at the European Symposium ’Rare Diseases a model of EU Solidarity’
29 February 2012
Brussels, Belgium

At the European level, Rare Disease Day 2012 highlighted rare diseases as a model of EU solidarity in today’s crisis-stricken Europe. In line with this initiative, EURORDIS has organised a symposium with the European Commission, in Brussels on February 29, to showcase the successes achieved over the last decade and to discuss the way forward. The TAG network has been presented by Prof. Dubertret, President of Fondation René Touraine and Ms. Zmazek, President of Debra Croatia. The presentation can be viewed online.

In 2011, thanks to your involvement, Fondation René 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 René 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 René 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

The 2011 Together Against Genodermatoses meeting

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This initiative is focused on patients and families suffering from severe genodermatoses in the countries of the Mediterranean basin and the Middle East.

This action is set up by:

• dermatologists, dermatology and paediatric dermatology societies
• public health officials
• ministries of Health and Social Affairs
• support associations
• all the stakeholders of the management of the patients and their family