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Mery chrismas end Happy now year - by Equipe de rédaction 24/12/2012 @ 15:33

Mery Chrismas et happy now year 2013

from the board of directors

The president

Scientific conference 2012 in Inglish - by Equipe de rédaction 25/06/2012 @ 09:09

GENERAL ASSEMBLY

CADASIL FRANCE - March 31, 2012

PRESENTATIONS AND CONTRIBUTIONS OF MEDICAL TEAM

To read this article to clic " here".

You can also go to "the reseaerch", next " Scientific conferences", next "2012"

The General Assembly of March 31, 2012 - by le comité de rédaction 03/04/2012 @ 10:18

The General Assembly of March 31, 2012 was a great moment of friendship.

Around fifty participants were able to make the trip. In the morning it was the normal annual general meeting. In his status report, the President recalled all the work performed by the Administration Board, activities on rewriting the medical card and the guide for caregivers, writing and sending three newsletters, updating the website, various meetings and gatherings.

He underscored the memorable meeting with Ms. Billie Duncan, President of the American sister Association CTWHH (“Cadasil Together We Have Hope”). He particularly thanked the association members who volunteered either for fundraising or to lend a hand in putting together the newsletter, to assist in the creation of the Facebook Page or to promote CADASIL disease on a television program (see the Journal of Health on France 5 TV).

He stressed on the necessity to actively participate in research funding. While our means will always be modest, this contribution is essential to demonstrate our commitment to researchers and public authorities. In 2011, the assistance we provided was €10,000. This funding will allow continuing efforts to enrich the monitoring database of patients and start a 24-hours study of arterial pressure analysis of these patients. These data are lacking, but they may prove to be very relevant for proper monitoring of patients.

The general meeting is followed with lunch which is joined by some members of the medical team.

The afternoon was dedicated to medical conference, with the presence of Doctor Anne Joutel who has shared with us on some good news. Her research is making good progress

Great strides have been realized in understanding the disease. Cooperation with various laboratories, in the USA, Germany and Denmark will accelerate our knowledge. A first therapy trial of laboratory called "proof of validation or concept" will begin for a period of 30 months. It should validate, we hope, the hypotheses following the results of some of the work of her laboratory.

Professor Chabriat provided an update on ongoing research within his medical team, with the imminent publication of the long follow-up study of patients, monitoring of patients with the 7-Tesla MRI machine, etc.

Finally, the medical team responded to various questions from members.

You will soon receive the full report of the Annual General Meeting and the medical conference.

♦

The article on genetic testing of asymptomatic individuals - by le comité de rédaction 21/03/2012 @ 11:34

The article on genetic testing of asymptomatic individuals has been published in the Journal of Neurology.

To read this article click " HERE"

Annual General Assembly on Saturday March 31, 2012 - by jeanluc 13/03/2012 @ 08:46

Annual General Assembly takes place this year on Saturday March 31, 2012

Please accept our invitation to attend the annual General Assembly.

The morning session is dedicated to statutory topics. Only “members with current standing” can take part in the voting process, but everyone wanting to inform is warmly invited.

At noon, we will have lunch together; this is a meal under an utmost friendly setting to allowing exchange between general members, the Administrative Board and those present from the Medical Team. To join our lunch, you are invited to register with a 5€ fee.

The afternoon session is devoted to the Medical Conference. This is an opportunity to present advances on clinical and fundamental research of the CADASIL disease.

Registration information can be found by clicking "HERE" or by sending an email to the Association President at the following address:

Jean Luc AIRIAU

Le Bois de la Moinerie

16480 BROSSAC (France)

Tel : (33)05 45 98 74 54

EMail : info@cadasil.com