De EGA is een pan-Europese umbrella groep die de belangen vertegenwoordigt van Gaucherpatienten en Gaucherpatientgroepen in Europa en elders in de wereld. Lokale patientgroepen kunnen in afzondering niet effectief werken. De EGA bied een goede vertegenwoo
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Nieuws En Evenementen
ORDER YOUR #IGD2019 TATTOOS - MEMBERS ONLY
5 June 2019
As part of IGD2019 "Rare Stars: Bringing hope, improving lives" we are looking into the possibility of producing the IGD2019 logo as temporary tattoos* which we will send to each of our member patient groups to share with …
NOMINATE YOUR RARE STAR FOR #IGD2019
4 June 2019
Following the announcement of our 2019 campaign for IGD "Rare Stars: Bringing hope, improving lives" we would like to ask you to nominate your own Rare Star - this should be someone who has made a difference in your life as a …
International Gaucher Day 2019 #IGD2019
31 May 2019
Following the success of the 2018 'Rare Stars: Giving hope, improving lives' campaign, we are continuing the theme but with a more personal focus in those unseen rare stars who have shown support to Gaucher patients during their …
May newsletter
28 May 2019
Our May newsletter is available to download here
April newsletter
25 April 2019
Our latest newsletter is now available - read about the IGA's plans to expand its global reach and its partnership with AVROBIO to explore gene therapy as a potential treatment for Gaucher patients here
AVROBIO explore gene therapy as a potential treatment for Gaucher disease
10 April 2019
The IGA are excited to be working in partnership with Avrobio to explore gene therapy as a potential treatment for Gaucher patients.
AVROBIO, a leader in lentiviral-based gene therapies, is a clinical stage company developing …March newsletter
26 March 2019
Read our latest newsletter here
Election of new Chair and Vice-Chair
6 March 2019
Following Pascal Niemeyer’s resignation from the IGA board of directors, we are pleased to announce that Vesna Aleksovska has been elected Chair and will be supported by Biljana Jovanović, who has been elected Vice-Chair. Both bring a …
February newsletter
28 February 2019
Read our latest newsletter here
Pascal Niemeyer resigns as IGA Chairman and Director
13 February 2019
Pascal Niemeyer, Chairman of the IGA since 2016, has decided for personal reasons to resign both, as chairman and as director of the IGA.
The IGA regrets but will respect his decision.
We are very thankful for Pascal´s engagement for the …