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    La description :the euro-wabb project is a collaboration of doctors, scientists and patient support groups in europe. spreading knowledge on rare diabetes, improving lives and developing research....

    Ce rapport est mis à jour en 22-Jul-2018

Created Date:2011-01-31

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skip to content skip to main navigation font size login user name password remember me forgot your password? forgot your username? create an account navigation home the project consortium / the group downloads guidelines diabetes information pages • wolfram syndrome • alström syndrome • bardet biedl syndrome news faq useful links project documentation lovd genetic variation database european genetic diagnostic laboratories to the registry: languages please select your preferred language the euro-wabb project an eu rare diseases registry for wolfram syndrome, alström syndrome, bardet-biedl syndrome and other rare diabetes syndromes. breadcrumbs you are here: home euro-wabb the euro-wabb project is a collaboration of doctors, scientists and patient support groups from all over europe. within the eu health programme 2008-2013 and its call for promoting health through the creation of new registers for rare diseases, euro-wabb is supported by the eu directorate general for health and consumers (dg-sanco) via its executive agency for health and consumers. the overall aim is for this register to be a key instrument to increase knowledge on these rare diseases, improve the lives of affected people through better management, and to develop clinical research. wolfram, alström, bardet-biedl (wabb) and other rare diabetes syndromes wabb syndromes constitute a group of rare, heritable disorders linked by intolerance of the body to glucose. each of these syndromes affects other parts of the body, including hearing and vision. this register is mainly directed towards wolfram syndrome, alström syndrome and bardet-biedl syndrome; however its scope includes some other rarer syndromes including wolcott-rallison syndrome and thiamine-responsive mebaloblastic anaemia, deafness and diabetes syndrome. long term studies on these syndromes are desperately needed to understand their natural history, relate genetic diagnosis to predicting outcomes, to establish a basis for evidence-based management, and to develop new treatments. structures the project combines unique strengths by linking a european patient-based data collection registry (work package (wp) 6) with the development of widespread availability of genetic testing across the eu (wp-5), and the development of a core dataset of information and evidence based diagnosis and management pathways (wp-4). wp-1 focuses on coordination of the project, wp-2 on dissemination to patients, health professionals and health policy-makers, and wp-3 on evaluation of the project. news news wolfram support and information day 2014 after the huge success of last year’s conference, the 2014 wolfram support and information day is taking place on saturday 29th november at the hilton northampton. read more... italian alstrom syndrome meeting an italian family meeting on alstrom syndrome will be held on saturday 5th october 2013. for further details please visit: www.millepini.it 9th joint meeting of paediatric endocrinology the 9th joint meeting of paediatric endocrinology will be held in milan, italy from the 19th - 22nd september 2013. we are delighted that the euro-wabb project will be showcased in a symposium on the opening day of the meeting. our guest speakers are professor fumi urano from washington university, st louis, and professor vincent marion from strasbourg, france. tweets by @euro_wabb -- the design and upkeep of this website is supported by funding from birmingham children’s hospital charities design by nice thinking design implementation by nice little website

Analyse PopURL pour euro-wabb.org


http://www.euro-wabb.org/en/en/the-project/project
http://www.euro-wabb.org/en/index.php?option=com_content&view=article&id=294&catid=2
http://www.euro-wabb.org/en/en/useful-links
http://www.euro-wabb.org/en/en/diabetes-information-all/common-and-rare-diabetes
http://www.euro-wabb.org/en/www.millepini.it/it/eventi/congresso-sindrome-alstrom.htm
http://www.euro-wabb.org/en/en/component/users/?view=reset
http://www.euro-wabb.org/en/en/
http://www.euro-wabb.org/en/en/diabetes-information-all/wabb/alstrom
http://www.euro-wabb.org/en/en/project-documentation/scientific-publications
http://www.euro-wabb.org/en/en/component/users/?view=registration
http://www.euro-wabb.org/en/en/component/users/?view=remind
http://www.euro-wabb.org/en/en/englishnews/287-9th-joint-meeting-of-paediatric-endocrinology
http://www.euro-wabb.org/en/fr/
http://www.euro-wabb.org/en/en/lovd-genetic-variation-database
http://www.euro-wabb.org/en/en/diabetes-information-all/wabb/bardet-biedl

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