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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.


Slovakian Ethics Approval Granted

The ethics approval for the first Slovakian site has now been given. This is great news and brings the total number of participating countries to 8.

Update from UK Wolfram Syndrome Association

The UK Wolfram syndrome Association, together with the Worldwide Society for Wolfram Syndrome Families and the French National Wolfram Syndrome Associations are contributing to a survey of urological symptoms associated with Wolfram syndrome. A copy of the survey questionnaire can be viewed on the UK Wolfram Association website, click HERE to read it. Please note that this survey is not linked to the Euro-WABB project. Questions can be directed to the Wolfram Association contacts (via their websites) or to the doctor organising the survey via email ( This email address is being protected from spambots. You need JavaScript enabled to view it. ).

A Parent's Story: 'Dancing with Bardet-Biedl syndrome'

This is a parent's story about their experiences and is reproduced with kind permission from the family. Click HERE to read it.

Human Genome Variation Society (HGVS)

The databases listing the published mutations in the WABB genes have been accepted into the HGVS listing. The HGVS ( promotes the documentation and distribution of genomic variation. The Euro-WABB databases will be shared widely and will also be linked to from OMIM's and Entrez Gene's gene entries.

Symposium: Rare Diseases A Model of EU Solidarity

29 February 2012 marked the fifth Rare Disease Day. Euro-WABB Associate Partners Prof. Ségolène Aymé, Kay Parkinson and Prof. Tim Barrett spoke at the EU Rare Diseases Day Symposium ‘Rare Diseases a Model of EU Solidarity’ which took place in Brussels. Prof. Barrett provided an overview of the project and the potential for impact, whilst Kay Parkinson gave an insightful presentation about her experiences as a parent entitled ‘From Parent to Partner’. Click 'Read More' to view videos of the presentations.