The ERKNet working groups on metabolic and stone disease is pleased to present you a survey on the rare condition of FANCONI BICKEL SYNDROME, also known as GLYCOGENOSIS XI.
Here we are asking to complete a 10 min survey requiring data on the clinical feature and diagnosis of your FBS patients, in order to get a more close-up view on the disease state and its variability and treatment in order to improve the care of the affected patients.
We again aim to publish the results and physicians contributing to this survey will be sharing into the authorship; either as named members of the â€œEuropean FBS consortium” or, as co-authors, according to the completeness of the data included.
The survey can be accessed under
and will be open for data submission until 15th July 2020.
If you have any problems with filling in the data, please do not hesitate to contact
With many thanks for your collaboration and looking forward to an informative and exciting data collection.
Thank you for your participation.