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The 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....
This report updates in 13-Jun-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
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
nicethinkingdesign.co.uk
nicelittlewebsite.co.uk
Whois is a protocol that is access to registering information. You can reach when the website was registered, when it will be expire, what is contact details of the site with the following informations. In a nutshell, it includes these informations;
Domain Name: EURO-WABB.ORG
Registry Domain ID: D161362431-LROR
Registrar WHOIS Server:
Registrar URL: http://www.gandi.net
Updated Date: 2017-07-17T02:40:52Z
Creation Date: 2011-01-31T11:14:29Z
Registry Expiry Date: 2027-01-31T11:14:29Z
Registrar Registration Expiration Date:
Registrar: Gandi SAS
Registrar IANA ID: 81
Registrar Abuse Contact Email:
Registrar Abuse Contact Phone:
Reseller:
Domain Status: clientTransferProhibited https://icann.org/epp#clientTransferProhibited
Registry Registrant ID: C161425018-LROR
Registrant Name: Richard Sinnott
Registrant Organization: The University of Melbourne
Registrant Street: Computing and Information Systems Department
Registrant Street: Melbourne School of Engineering
Registrant Street: Level 3, Doug McDonell Building
Registrant City: Melbourne
Registrant State/Province: VIC
Registrant Postal Code: 3010
Registrant Country: AU
Registrant Phone: +61.390354531
Registrant Phone Ext:
Registrant Fax:
Registrant Fax Ext:
Registrant Email: [email protected]
Registry Admin ID: C161425018-LROR
Admin Name: Richard Sinnott
Admin Organization: The University of Melbourne
Admin Street: Computing and Information Systems Department
Admin Street: Melbourne School of Engineering
Admin Street: Level 3, Doug McDonell Building
Admin City: Melbourne
Admin State/Province: VIC
Admin Postal Code: 3010
Admin Country: AU
Admin Phone: +61.390354531
Admin Phone Ext:
Admin Fax:
Admin Fax Ext:
Admin Email: [email protected]
Registry Tech ID: C160537432-LROR
Tech Name: Guido Grazioli
Tech Organization: The University of Melbourne - Aurin Project
Tech Street: The University of Melbourne
Tech Street: 1-100 Grattan Street
Tech Street: Parkville, VIC
Tech City: Melbourne
Tech State/Province:
Tech Postal Code: 3010
Tech Country: AU
Tech Phone: +61.383440387
Tech Phone Ext:
Tech Fax:
Tech Fax Ext:
Tech Email: [email protected]
Name Server: C.DNS.GANDI.NET
Name Server: B.DNS.GANDI.NET
Name Server: A.DNS.GANDI.NET
DNSSEC: unsigned
URL of the ICANN Whois Inaccuracy Complaint Form: https://www.icann.org/wicf/
>>> Last update of WHOIS database: 2017-09-24T11:18:10Z <<<
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REFERRER http://www.pir.org/
REGISTRAR Public Interest Registry
SERVERS
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ARGS euro-wabb.org
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DOMAIN
NAME euro-wabb.org
HANDLE D161362431-LROR
CREATED 2011-01-31
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C.DNS.GANDI.NET 217.70.179.1
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OWNER
HANDLE C161425018-LROR
NAME Richard Sinnott
ORGANIZATION The University of Melbourne
ADDRESS
STREET
Computing and Information Systems Department
Melbourne School of Engineering
Level 3, Doug McDonell Building
CITY Melbourne
STATE VIC
PCODE 3010
COUNTRY AU
PHONE +61.390354531
EMAIL [email protected]
ADMIN
HANDLE C161425018-LROR
NAME Richard Sinnott
ORGANIZATION The University of Melbourne
ADDRESS
STREET
Computing and Information Systems Department
Melbourne School of Engineering
Level 3, Doug McDonell Building
CITY Melbourne
STATE VIC
PCODE 3010
COUNTRY AU
PHONE +61.390354531
EMAIL [email protected]
TECH
HANDLE C160537432-LROR
NAME Guido Grazioli
ORGANIZATION The University of Melbourne - Aurin Project
ADDRESS
STREET
The University of Melbourne
1-100 Grattan Street
Parkville, VIC
CITY Melbourne
PCODE 3010
COUNTRY AU
PHONE +61.383440387
EMAIL [email protected]
REGISTERED yes
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