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The EURO-WABB Project

An EU Rare Diseases Registry for Wolfram syndrome, Alström syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes.

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Euro-WABB Recruitment Reaches 160!

164 participants from 9 countries have now been recruited to the Euro-WABB registry

Cross Border Healthcare

A new EU law on patients' rights in cross-border healthcare was agreed in March 2011. European Member States have until October 2013 to enact it nationally. You can read more about the directive by clicking HERE

EURORDIS Registries Survey - Take Part!

EURORDIS, the European patient organisation alliance, is conducting an online survey to gather patients’ thoughts and expectations about rare disease registries in Europe. Click HERE to visit their website and access the survey.

Spanish Rare Diabetes Registry Launched

Spanish researchers have launched a statewide database to collect information on rare inherited diabetic syndromes. Registration is focused on three rare diseases: Wolfram, Bardet-Biedl and Alström syndromes.

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Wolfram Information and Support Day

The Wolfram Information and Support Day took place on 20th October 2012. Copies of the presentations given during the day are now available. Please click on the 'Presentations' tab on the left of the screen to read them.