BEST WHISHES FOR THE NEW YEAR !
- new partners have joined the project: Kuwait, Bulgaria, Spain
- new links with Eurordis
- the project has been taken into account as a pilot network for the management of rare diseases and for the complementarity between European and North-South networks.
- the development of new tools: the new TAG website, the new website for the working groups, a newsletter in French available on the Génodermatoses et Méditerranée homepage and in English on the TAG homepage.
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
Ichthyosis Awareness Month 2019 : more than ever needed