Rare Diabetes

EURO-WABB: An EU Rare Diseases Registry

Investigator:

T Barrett t.g.barrett@bham.ac.uk

Sponsor:

University of Birmingham

Summary:

The general objective of Euro-WABB is to support efficient diagnosis, treatment, and research for Wolfram, Alström and Bardet-Biedl syndromes and other rarer diabetes syndromes in Europe. Wolfram, Alström and Bardet-Biedl (BBS) (WABB) are rare genetic diseases syndromes (0.57, <0.2 and 0.8 cases/100,000 respectively; Orphanet Report Series Nov 2009 No. 1) with clinical overlap, chronically debilitating, and highly complex. There are no orphan drug treatments available for these conditions and research has been limited and scattered across different laboratories throughout the EU. This has led to a lack of specific health policies for these diseases and scarcity of expertise, translating into delayed diagnosis and difficultly in accessing appropriate care for patients.

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