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Event in Netherlands
Rare diseases across the
This day is an opportunity
28 Feb 2019 Maastricht

PSR Group BV

Marshall-Smith syndrome (MSS) is a very rare syndrome. MSS is a congenital defect and is caused by one change in the hereditary property NFIX. With this syndrome the bones develop faster than usual.

The birth of a child with MSS is often long. It has usually a large forehead and a small chin. The eye sockets can be shallow and the whites can look blue. Most children with Marshall-Smith syndrome have nutrition and breathing problems. Children with MSS usually die young age. MSS cannot cure. The treatment consists of reducing the characteristics, such as nutritional problems and infections.

Thursday, February 28, 2019 is all about this rare illness, will you help on Rare Disease Day? We are organizing this event to collect money that the MSS Foundation uses to host there MSS Family Event in 2019.

We cordially invite your company to participate in sports with us and participate in an indoor organized by PSR beach volleyball tournament. Besides supporting this good cause it is an excellent sporting activity for a company as something fun to undertake. A fully catered evening! The money raised will be donated MSS foundation*.

If you and your company can not participate in sports this day, you can as a company show your social involvement through a donation for the MSS foundation on account: NL73ABNA0614615690

stating: donation Charity Angels

More information on how you can register with your team and / or how you can contribute to this event


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