Rare diseases day Netherlands 2021

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Rare diseases day Netherlands 2021

Every year on the last day of February worldwide the rare diseases day is organized
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We have been actively participating in the global rare diseases day for years. Unfortunately, in 2021, due to the COVID-19 virus a ‘real’ day can’t be organised, but the rare diseases day will become a virtual day in 2021.

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision-makers to address the needs of those living with rare diseases.

The campaign started as a European event and has progressively become a world phenomenon, with the USA joining in 2009 and participation in over 100 countries all over the world in 2020. We hope even more will join in 2021.

Do you want to share this message as much as possible so that we can reach as many people as possible? Thanks in advance on behalf of patients and their families!

Rare disease day website

Support CMTC-OVM

With our community we want to improve the quality of life of people who have vascular malformations. CMTC is a rare condition and therefore we think it is important that everyone who has CMTC, or other blood vessel abnormalities, can come into contact with each other. We cannot do this without the support of our donors.

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