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

WE HOPE TO ACHIEVE THESE GOALS WITH YOU

-----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

The 2011Together Against Genodermatoses working session
was held on October 13-15, 2011.
It was organized by  MAGEC – Necker, the national centre of expertise for genetic skin diseases
and Fondation René Touraine
at Necker – Enfants Malades Hospital in Paris.

To learn more about the 2011 meeting, click here.

TAG partners at the 2011 working session

-----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

The TAG Project: Together Against Genodermatoses

Improving health care and social support for patients and families with severe genodermatoses

The general objective of this project is to improve the delivery of health care and social support for patients and family affected by severe genodermatoses by getting together the stakeholders involved in the health care and the social support from the EU Member States and the candidate countries.

South Mediterranean and Middle-Eastern countries who have contributed a lot to genetic research and who have an extensive experience in the management of genodermatoses are involved as well.

• supporting the disease knowledge
• the development of strategies/mechanisms for the exchange of
• information among people affected by rare diseases
• the promotion of better epidemiological studies
• the European networks of reference for rare diseases.

The main methods and means used to reach the objective are:

• the identification and the participation in 3 working sessions (2009, 2010, 2011) of the main stakeholders of the health care and social support of patients and families with severe genodermatoses,
• the structuring of multidisciplinary and European task forces for 6 groups of diseases,
• the exchange of information on epidemiology, prevention, diagnosis and health care,
• the structuring of national registries for epidemiology,
• the definition of guidelines,
• the listing of the available resources/expertise,
• the assessment of costs,
• the discussion with the pharmaceutical companies,
• the support to the development of community networks, of a network of centers of expertise and of a network of association of patients.

The project is expected to have a positive implication for the health of the European citizens who will directly benefit from:

• a better information and training of their caregivers in the epidemiology, prevention, diagnosis and health care fields,
• the structuring of community networks,
• a better access to drugs and medical devices,
• the strengthening of their associations of patients,
• the increase of awareness of their public officials.