WANTED! Student for designing information material about sleep problems in children with Angelman syndrome.
Wat zoeken we: we weten wat we willen vertellen, maar vormgeven kunnen we niet. We zoeken een student die met ons samen hieraan wil werken en die is staat is om deze video’s van een grafische vormgeving te voorzien. We denken bijvoorbeeld aan een geanimeerde infographic/tekeningen. We willen bewust geen filmpje van een echt kind, omdat we denken dat dat het voor ouders minder makkelijk maakt om hun eigen situatie op de informatie te projecteren.
Continue ReadingNew knowledge about the quality of life in Angelman patients published!
ENCORE researcher Doesjka Hagenaar recently published her study in which she investigates the quality of life of Angelman patients.
Continue ReadingENCORE presents on 'ZeldSamen'
On February 16, ENCORE was also represented at the national symposium of ZeldSamen, an association that offers parents information, contact and recognition after the diagnosis of a rare genetic syndrome.
Continue ReadingToday is International Angelman day
There are approximately 150 children with Angelman syndrome living in the Netherlands. These children have been helped in the ENCORE expertise center since 2010. A lot of research is also done in the ENCORE expertise center, both fundamental and clinical. For example, we participate in the TANGELO trail of Roche.
Continue ReadingENCORE runs the Runexpected sponsor run
On Saturday 21 May, employees of our ENCORE expertise center put on their running shoes and took part in the Runexpected, a sponsored run to raise money for scientific research into Neurofibromatosis.
There were employees from several departments of the party, such as child and adolescent psychiatry/psychology, pediatrics and neurology adults.
It was a very nice and funny event where our team put its best foot forward and ran with great pleasure. Parents and patients were very happy with our involvement.
We are very proud that we were able to raise a nice amount together! In total, more than 100,000 euros has been raised!! How fantastic!
Expertise center for DNA repair disorders in the spotlight!
Het nieuwe expertisecentrum voor DNA-repairstoornissen staat in de spotlight op Amazing Erasmus MC.
Continue ReadingFocus on learning a movement task in adults with NF1
We hebben volwassenen met NF1 getest op aandacht en op het aanleren van een nieuwe bewegingstaak in een experimentele omgeving. We observeerden geen verschil tussen volwassenen met en zonder NF1 in de uitvoering van de taken betreffende alertheid, volgehouden aandacht en het aanleren van een motorische vaardigheid. Behalve dat volwassenen met NF1 iets langzamer waren in hun bewegingen tijdens de bewegingstaak.
Continue ReadingENCORE thanks Henriette and welcomes Marie-Claire as clinical head!
At the beginning of October we said goodbye to our clinical head of ENCORE, Prof. Dr Henriette Moll.
Continue ReadingChris Gale swam across the Channel to raise money for Angelman Syndrome research!
On August 2, Chris Gale managed to swim across the Channel from England to France. With this he raised money for research into Angelman Syndrome.
Continue ReadingHIP HIP HOORAY ENCORE 10 year anniversary!
The ENCORE expertise center is officially 10 years old. Although ENCORE was founded in 2010, the action plan was signed in June 2011 by the dean and the leaders of ENCORE Ype Elgersma (scientific head) and Henriette Moll (clinical head).
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