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Establishment of an expert panel for BBS

led by 3 doctors (Helen May-Simera, Carsten Bergmann, Metin Cetiner) :

An expert committee is being set up from various doctors and representatives of the patient group in order to coordinate current research aspects for BBS in Germany. In addition to 2 representatives of the patient group, a nephrologist, a human geneticist, an ophthalmologist and a microbiologist are represented in this committee. 

Research for the immune system with BBS

led by doctor Wartsen :

At the end of 2021, a new research project was launched at the University Hospital in Bonn to investigate the thesis that BBS sufferers have a stronger immune system than non-affected people and as a result are less susceptible to everyday illnesses such as flu. In May 2022, this research project will be presented to the BBS Germany patient group at a Zoom meeting. 

Neocyst Project :


NEOCYST is a research project on cystic kidney disease in children. It is implemented by a network of clinicians, geneticists and scientists. The project is funded by the Federal Ministry of Education and Research (BMBF) and supported by the Society for Paediatric Nephrology (GPN).

The NEOCYST study aims to gain a better understanding of cystic kidney disease and Bardet-Biedl syndrome. The knowledge gained should be used to improve :

  • Targeted diagnosis,

  • sound advice and

  • and lead to the development of future therapeutic approaches.


Opportunities for participation

Patients of all ages who have been diagnosed with BBS can participate.

Participation in the project is based on a detailed questionnaire. The questionnaire is to be filled in by the treating physician. Patient data are stored and collected in a pseudonymised form, so that no conclusions can be drawn about the individual person.

NEOCYST contact for interested parties

Dr. Metin Cetiner, University Hospital Essen
Hufelandstraße 55, 45147 Essen

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