MEMBERS' CORNER
Next 12th and 13th April 2018, the VII International Conference on Ectodermal Dysplasia will be held in Murcia (Spain), an agreement adopted at the last Conference held in Oslo in 2015. Since then, there have been many scientific advances worth to be reviewed and shared with clinicians, researchers, patients and family members. The Conference will also constitute the 1st International Course on Ectodermal Dysplasia.
On April 14th will be held the International Meeting of Advocacy Group Leaders (EDIN) to be followed by the family meeting.
The organization is run by the Spanish Association of People Affected by Ectodermal Dysplasia (AADE) together with the Research Group of Clinical Genetics and Rare Diseases of the Murcian Institute of Biomedical Research (IMIB-Arrixaca) and CIBERER, and the Ministry of Health. We all have made a great effort to give an interdisciplinary and international approach to the congress, which together with the meeting of advocacy groups and families and the collaboration of numerous institutions and regional and national companies, highlights, for the first time, the importance of the collaboration of all the agents in the progress and health and social welfare.
The Conference is of great scientific-sanitary relevance, with the assistance of numerous ED experts worldwide [including those responsible for the European Network of Rare Skin Diseases (ERN-Skin) and the European Working Group] and the presentation of the results of the most recent research work in this area, including the updating of the clinical trial of a new therapy.
In addition, we will report that the Region of Murcia is developing a comprehensive assistance circuit for the care of these patients, with the aim of becoming a National and European reference, and the only translational research project funded in this area within the program of Strategic Aid in Health of the ISCIII (Instituto de Salud Carlos III) for the characterization of all affected Spanish patients and the identification of new genes associated with Ectodermal Dysplasia (PI17 / 00796, PI14/01259), highlighting the National and European approach of translational research policies that are being developed in our Region.
From the social point of view, the Conference will help to show that ED community is a strong community that grows internationally (EDIN) and has achieved important achievements, the result of work and the struggle of many people. Proud of it, it is time to face the future jointly and severally, without borders, where the participation of families, patients, volunteers, clinicians, researchers, institutions and representatives of associations is, to the extent possible, in the same direction, with the involvement and collaboration of our entire community.
We are also proud to celebrate this Conference in Murcia, in the European Year of Cultural Heritage, turning the Region of Murcia into a European capital to raise awareness of our history, common values and reinforce a sense of belonging to the common European space.
From this global perspective we celebrate this VII International Conference in which we await you with great enthusiasm.
On April 14th will be held the International Meeting of Advocacy Group Leaders (EDIN) to be followed by the family meeting.
The organization is run by the Spanish Association of People Affected by Ectodermal Dysplasia (AADE) together with the Research Group of Clinical Genetics and Rare Diseases of the Murcian Institute of Biomedical Research (IMIB-Arrixaca) and CIBERER, and the Ministry of Health. We all have made a great effort to give an interdisciplinary and international approach to the congress, which together with the meeting of advocacy groups and families and the collaboration of numerous institutions and regional and national companies, highlights, for the first time, the importance of the collaboration of all the agents in the progress and health and social welfare.
The Conference is of great scientific-sanitary relevance, with the assistance of numerous ED experts worldwide [including those responsible for the European Network of Rare Skin Diseases (ERN-Skin) and the European Working Group] and the presentation of the results of the most recent research work in this area, including the updating of the clinical trial of a new therapy.
In addition, we will report that the Region of Murcia is developing a comprehensive assistance circuit for the care of these patients, with the aim of becoming a National and European reference, and the only translational research project funded in this area within the program of Strategic Aid in Health of the ISCIII (Instituto de Salud Carlos III) for the characterization of all affected Spanish patients and the identification of new genes associated with Ectodermal Dysplasia (PI17 / 00796, PI14/01259), highlighting the National and European approach of translational research policies that are being developed in our Region.
From the social point of view, the Conference will help to show that ED community is a strong community that grows internationally (EDIN) and has achieved important achievements, the result of work and the struggle of many people. Proud of it, it is time to face the future jointly and severally, without borders, where the participation of families, patients, volunteers, clinicians, researchers, institutions and representatives of associations is, to the extent possible, in the same direction, with the involvement and collaboration of our entire community.
We are also proud to celebrate this Conference in Murcia, in the European Year of Cultural Heritage, turning the Region of Murcia into a European capital to raise awareness of our history, common values and reinforce a sense of belonging to the common European space.
From this global perspective we celebrate this VII International Conference in which we await you with great enthusiasm.
| Gema Chicano Saura President of Organizing Comitee of 7th International Conference Ectodermal Dysplasia Encarna Guillén-Navarro, MD, PhD Vice-President of Organizing Committee President of Scientific Committee |
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