Génodermatoses et Méditerranée / Genodermatoses in Mediterranean

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"Genodermatoses and Mediterranean - Together for a better care" is an international public health network, launched in 2003 by Fondation René Touraine in partnership with Laboratoires Pierre Fabre.

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

Since 2008, "Genodermatoses in Mediterranean" is co-funded by the European Union, in the framework of the Public Health Programme: Together Against Genodermatoses.

The 2009 working session was held in Athens, Greece on May 22-25, 2009.

The 2010 meeting will be held on 22-24 octobre 2010 in Roma, Italy, at Ospedale Pediatrico Bambino Gesù. Contact

Participants in the 2008 working session

Orphanews Europe focus on "Genodermatoses and Mediterranean"

29 February 2008, Orphanews Europe

The international genodermatoses project continues its work for Mediterranean-based patients

Genodermatoses are a group encompassing some 300 various genetic skin diseases, almost all of which are rare.
The burden of severe genodermatoses is huge for patients and their family. Social exclusion, disability, and shortened life expectancy make this population very vulnerable.
Prevalence is considered higher in the Mediterranean basin region due to a number of factors: consanguineous marital practices in certain regions, isolated cultural or religious sects, resistance to prenatal screening, and limited access to public resources.

In 2003, the Fondation Rene Touraine (a European foundation promoting therapeutic advances in dermatology) and the Laboratoire Pierre Fabré launched an initiative entitled Genodermatoses and Mediterranean with the collaboration of specialists, scientists, policy makers and health officials from Euro Mediterranean and Middle Eastern countries.

This initiative seeks to improve health care and social support, promote clinical research programmes, and foster networking in the field of severe genodermatoses.

Each year, a Working Session is organised to bring together the project partners. In 2007, the Working Session was held in Alexandria, Egypt in late April.
Eleven countries participated in the 2007 Working Session, in addition to three new countries that joined the initiative: Cyprus, Turkey and Saudi Arabia.

Some achievements from the 2007 Working Session include:

involvement of new partners within many countries (geneticists, dermatologists, paediatricians, patient organisations, university clinics, et cetera);
the finalisation of co-funding proposals at the European Union level in the fields of research and public health;
specific social and healthcare training in various countries;
the establishment of five working groups targeting diseases with a severe repercussion on quality of life: epidermolysis bullosa, severe ichthyosis, palmoplantar kerotoderma, xeroderma pigmentosum, and other severe genodermatoses (a subgroup of eight other identified diseases);
new referral centres in four different countries;
the integration of genodermatoses into major health policies in various countries (rare diseases in Algeria; skin diseases in Morocco; handicap in Egypt and Tunisia; genetic diseases in France);
and various research initiatives in different countries.

The goals for 2007-2008 have been identified as the establishment of good practices, health care community networks, access to drugs and medical devices.

The 2008 Working Session will be held in Rabat, Morocco, from 6-7 June.