7. Intern.Conference on Ectodermal Dysplasias2018

[Andrea Burk]

Dear Sir/Madam,

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.

[Andrea Burk]

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.

You will find all the information on the official Conference webpage attached below:

http://www.7thconferenceed2018.com/12373/detail/7th-international-conference-on-ectodermal-dysplasia.html

From this global perspective we celebrate this VII International Conference in which we await you with great enthusiasm.

For further information, please do not hesitate to contact us.
Yours faithfully,
María Bernal
Técnico en Eventos • M.I.C.E. Murcia   T. (+34) 968 272 393
Pl. Circular, 6 • 30008 Murcia      congresosmurcia@viajese

[Andrea Burk]

Dear Friends,

Time flies and we are just a few weeks away from the 7th International Conference on Ectodermal Dysplasia that will take place in Murcia, Spain from the 12th to the 14th April 2018. As you already know from previous e-mails, this conference will be an unique opportunity to learn more about the “state of art” on diagnosis and treatments on Ectodermal Dysplasia. The scientific program will provide a global overview of the current situation of research too.

It´s been like a rollercoaster since our last conference back in 2015. Frankly speaking, the topics contained in the scientific program are highly recommended for anyone interested in Ectodermal Dysplasias. At the same time, we expect to include some additional topics which I´m sure will be of great value. So, I recommend you to keep checking the program in our website from time to time (www.7thconferenceED2018.com).

 
This Conference also has one important feature for students of medicine. It will be the First International Course on Ectodermal Dysplasias. So, those students attending the conference will be able to obtain some credits from the Spanish Ministry of Education. We already have some registered students (some foreign students too).

[Andrea Burk]

....
I also decided to get back to you to provide some additional information:

•      Firstly, the new limit date to register at the normal rate has been changed to 6th April 2018. So, we still have some space for more people. In this regard, I would appreciate if you could announce this conference in the website of your organizations. Moreover, I encourage you to inform your respective Medical Advisory Board that registration is still open at the normal rate.
•      Secondly, the name of the hotel where all EDIN National Leaders and lecturers will be accommodated is called AC Murcia Hotel. This hotel is the brand name in Spain of Marriot Hotel Group.
•      Thirdly, the venue where the conference will be held is the General Archive of Murcia. We have reserved a room with a capacity up to 200 people.

On Saturday April 14th, we will have EDIN Leaders Meeting. We are already working on the program which I´m sure it will meet everyone expectations, however if anyone of you would like to make a proposal to include certain topics, I encourage you to step forward and let Diana, Ulli or myself know. We will be more than happy to include them in the program.
Kind regards