helps prepare talking with the physician

“Thanks to, I am well prepared to talk with the physician” - Aaike van Oord

Left: Aaike van Oord, Advisor Science communications and chairman of the LGD Alliance Europe 

As a science communication professional and father of a chronically ill child, I am a critical user of patient information. There is often only little information about rare disease in Dutch language. If a website does not provide an answer to my question, it should at least point me to the right direction. Or it should be possible to ask my question to an expert and make the answer visible for other patients. The website provides extensive information on many biobanks, types of biobank research and trials that make use of biomaterials. 

My child benefits most from specialist research with body tissue. For their research, scientists have to combine body materials from the handful of patients in Europe. So, it is important that patient data and body material is stored in a FAIR way. Thanks to the website, patients can prepare themselves to talk with their physician about the importance of FAIR storage of their data and biopsies, and the possibilities this creates for further research.