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97410-1.jpgHAPPY NEW YEAR - by Fondation René Touraine 27/01/2010 @ 10:22

BEST WHISHES FOR THE NEW YEAR !

2009 has been a good year for TAG and Genodermatoses in Mediterranean: 2010 promises to be exciting:
  • all together, we have to develop recommendations for health care and social support and adapt them to the situation of each country.
  • all together, we have to identify the available resources (diagnostic tests, clinics, associations of patients, research and trials, websites...), in each country
  • evreyone will contribute to the newsletter to be published every 2 months in French and in English: the next newsletter will be published in February.
  • develop, update and translate in English and in French www.tag-eu.org and www.genodermatoses-et-mediterranee.org
  • further discussion on opening the project to other countries: this question arises because the project has been selected as pilot for the European Reference Networks
  • at last, a highlight will be the 2010 working session from 22 to 24 October, in Rome, Italy

... / ... Read more...


Welcome to TAG

> To the Genodermatoses working groups website
> To the Genodermatoses in Mediterranean website

The TAG Project:
Together Against Genodermatoses
Improving health care and social support
For patients and families affected by 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.

The project should contribute and add value to the EU public health programme by:
  • 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.
The TAG projet is co-funded by the European Commission (Agreement Number: 2007 335).
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