August Newsletter

13 August 2018

Read the latest newsletter from the EGA here

Biennial Members Meeting – 15 & 16 October 2018

4 July 2018

The EGA’s biennial members meeting will now take place in Riga (Latvia) on Monday 15 and Tuesday 16 October 2018 at the Tallink Hotel 

We will be inviting ONE representative from each of our member associations to attend our meeting.

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Results of EGA 2018/2020 Election

28 June 2018

Following the recent board member elections for 2018/2020 we are pleased to announce that the new board, who will take effect from the close of the biennial members meeting in October 2018, will be:
 

Vesna Aleksovska (Macedonia)
Diana …

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Morocco to join the EGA

21 June 2018

We are pleased to announce that the Moroccan Vaincre les Maladies Lysosomales (Espoir VML Maroc) has now joined the EGA, taking our membership up to 47 countries worldwide.

GDPR Changes. Tell us how you want to be contacted.

30 April 2018

GDPR

The Data Protection Law is Changing...

Due to changes in data protection legislation, soon the European Gaucher Alliance won’t be able to contact you about any of our services or activities unless you explicitly give …

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Pakistan to join the EGA

23 April 2018

We are pleased to announce that the Pakistan Lysosomal Storade Disorders Society has now joined the EGA, taking our membership up to 46 countries worldwide.

EGA Board Membership Opportunities

10 April 2018

This year the EGA will be holding elections to form its new board ahead of the biennial members meeting in Genoa, Italy.  There are eleven vacancies to fill.  We are writing to you now to give you time to consider whether you would like to …

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Advocacy training grant

10 April 2018

EGA commitment to training

For a number of years an integral part of the EGA work programme has been the continued support of training, education and the sharing of knowledge amongst patient advocates.  The EGA are pleased to announce the …

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Important Changes to Data Protection.

7 February 2018

Data Protection Law is changing...... Due to changes in data protection legislation; soon the European Gaucher Alliance (EGA) won’t be able to contact you about any of our services or activities unless you explicitly give your …

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Rare Disease Day Video 2018

30 January 2018

https://www.rarediseaseday.org/videos