News

Your opinion about an app to report side-effects and receive safety information

7 September 2016

The European project Web-RADR: Recognising Adverse Drug Reactions (http://web-radr.eu/) is conducting a survey. The survey is about an app for mobile phones and tablets to report side-effects and receive safety information of medicines. Safety …

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A new Korean ERT 'Abcertin' - Important Information for doctors treating Gaucher patients

30 August 2016

The EGA has been contacted by Genzyme regarding a new enzyme replacement therapy called ‘Abcertin’ manufactured in Korea, which is being marketed as a biosimilar.

Genzyme has asked the EGA and the EWGGD for support by sending the …

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Spotlight on Gaucher 2016 Campaign

29 August 2016

For 2016, Spotlight on Gaucher is a global social media campaign that encourages those whose lives have been touched by Gaucher disease, as well as a broader audience, to join hands representing a network of interconnected supporters around the …

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Change to the constitution: Members Vote paves the way to the EGA becoming global

18 July 2016

The EGA is delighted to announce that during its Biennial General Meeting in Zaragoza on 29 June, its members expressed their wish to amend the founding constitution by abolishing the differentiation between full and associate membership. 

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EGA announces new chairman

18 July 2016

New board

We are pleased to announce that on 29 June, Pascal Niemeyer was elected by the new board of the European Gaucher Alliance as chairman.

Pascal has been working on the board since 2008 and is responsible for the areas of public …

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Dr Roscoe Brady

20 June 2016

The EGA is sad to announce the death of Doctor Roscoe Brady aged 93.  Dr Brady worked tirelessly at the National Institute of Health in Bethesda USA to identify metabolic defects in hereditary storage disorders including Gaucher disease and …

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Guatemala and Japan to join the EGA

13 April 2016

We are pleased to announce that the Guatemalean Association for Lysosomal Diseases (ANGEL) and Association of Gaucher Patients in Japan have now joined the EGA as associate members.

EGA GOES TO SOUTH AFRICA

13 April 2016

One of the EGA’s objectives is to support access to education and training for clinicians that are responsible for the clinical management of patients with Gaucher disease. The EGA have recently been able to support access to compassionate …

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Launch of the Official Website of the 12th EWGGD Meeting In Zaragoza, Spain

17 March 2016

Together with the organising committee of the 12th EWGGD Meeting we are delighted to provide you with more information about the next meeting.

This year’s meeting will be held from 29th June to 2 July 2016 at the Eurostars Boston Hotel in …