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.
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.
Rare Disease Day 2019
Rare disease day (February 28th 2019) is being marked by various events around Europe and globally. Follow the events here
New funding for the Registry
Thanks to generous support from an alliance of patient support groups, French Wolfram Association, Snow Foundation, and Eye Hope Foundation, there is funding to upgrade the EURO-WABB registry. Professor Richard Sinnott of University of Melbourne is undertaking this work, through a contract with University of Birmingham. This work will be completed over the next 3 months. Please bear with us while the registry, database and site is being upgraded!
News from European Society for Paediatric Endocrinology
Applications Open for 2019 ESPE Research Fellowship
The European Society for Paediatric Endocrinology (ESPE) provides one Research Fellowship to support young paediatricians or scientists to conduct research in any field of endocrinology at leading institutions worldwide. The Research Fellowship is sponsored by Novo Nordisk Health Care AG in Switzerland.
The fellowship can be held in the applicant’s current department or could be held at another institution with the relevant expertise in paediatric endocrinology. If the fellowship is held in the applicant’s current department, a period of time spent in another institution to, for instance, learn another technique, will be viewed favourably. Projects related to diabetes and obesity will not be considered in this call.
To be eligible the applicant must:
- Be proposed by their current Supervisor/Head of Department, who must be an ESPE member.
- Be an ESPE member or have applied for membership.
- Be based in Europe at the time of application.
One research fellowship grant of €125,000 is available for up to two years of research training in a centre of excellence. An additional €15,000 is available for consumables.
Applications should be submitted by the deadline of 30 April 2019.