16 March 2020
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Biobanken.nl on Rare Disease Day 2020

In their search for better treatment and diagnosis, medical researchers use patient material and data stored in biobanks. The website biobanken.nl was set up to answer questions patients might have about research with their body tissue and data. It is especially important to collect biological samples and data from patients with rare diseases. Biobanken.nl was showcased on National Rare Disease Day.

On the rarest day of the year, the 29th of February, the VSOP – the Dutch Patient Alliance for Rare and Genetic Diseases organized a festival. The festival was visited by more than 100 patients with a rare disease, their loved ones and patient representatives. The website Biobanken.nl was promoted to all attendees with a flyer on display at the stand and a banner.

Patients with a rare disease are an important group of people for biobanks. In search for treatment, researchers need data and tissue of many patients. These materials are of course difficult to obtain. Biobanken.nl gives answers to questions about biobank research and provides biobanks with the opportunity to communicate information about biobanking and biobank research to patients and the general public.

The new look of biobanken.nl

The website has been available for some years. On the advice of the Public and Patient Advisory Council of BBMRI, Aaike van Oord of the NKI, realized a full make-over of the website. The website was put together in close cooperation with a diverse group of stakeholders, including patients and some big biobanks and supported financially by BBMRI.

Read more in this flyer and press release (in Dutch).