NATIONAL ALLIANCE

VERENIGING SAMENWERKENDE OUDER EN PATIËNTENORGANISATIES (VSOP) logo
VERENIGING SAMENWERKENDE OUDER EN PATIËNTENORGANISATIES (VSOP)

Netherlands


Rare Disease Day in 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 ALLIANCE

VERENIGING SAMENWERKENDE OUDER EN PATIËNTENORGANISATIES (VSOP) logo
VERENIGING SAMENWERKENDE OUDER EN PATIËNTENORGANISATIES (VSOP)

FRIENDS IN Netherlands

Events in Netherlands


Awareness for medical issues by Adrenal patients! image
Awareness for medical issues by Adrenal patients!

Bijnierpatienten in Nederland en Europa ervaren vaak problemen, bij het tijdig en juist diagnositiceren van hun aandoeningen/ziekten.Door...

28 Feb 2021 - 31 Dec 2021 - The netherlands (online)

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Mosaic of PID's image
Mosaic of PID's

In order to create awareness, the coming weeks we will ask our members via social media to send in pictures related to their...

09 Feb 2021 - 27 Feb 2021

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Rare is many, grow in the light and Bloom image
Rare is many, grow in the light and Bloom

Stichting SpierKracht Netherlands reaches out global. Covid 19 has quarantined a lot of  families in the house. With our...

15 Jan 2021 - 01 Mar 2021 - Bilthoven

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