Netherlands

The Netherlands has been active with Rare Disease Day since its beginning in 2008. The National Rare Disease Day (‘Nationale Zeldzameziektendag’) is organized by VSOP, the Dutch National Patient Alliance for Rare and Genetic Disease.

In order to raise awareness for people living with a rare disease, VSOP launches five video’s. Meet Silvana, Djuna, Femke, Michael and Ton, who will tell you their personal stories. They are in the spotlight and talk about the challenges and needs they experience living with a rare disease; the diagnostic Odyssee, access to medicines, access to information, the importance of integrated care and centres of expertise etc.

In the week before Rare Disease Day 2021 (February 28th) VSOP will launch one of these video’s on social media on a daily basis. We hope the video’s will be shared, so we show that rare is many, rare is strong and rare is proud!

National alliences

Other Friends

Stichting OverdrukSyndroom NL

Country Organiser
Janny van der Veer