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News

  • 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 …

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  • Shire marks 30th Anniversary with Innovative Global Program to benefit children with Rare Diseases

    17 February 2016

    To mark the company's founding 30 years ago this year, Shire is announcing a global program intended to benefit children with rare diseases, their families and the rare disease community. Shire is commencing a three-year initiative with global …

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  • China to join the EGA

    10 February 2016

    We are pleased to announce that the Beijing Zhengtao Gaucher Disease Care Center (北京正涛戈谢氏罕见病关爱中心) in China has now joined the EGA as an associate member.

  • The Patient Group Handbook: A Practical Guide for Research and Drug Development

    11 January 2016

    The following book is a must-read for anyone with an interest in orphan drug development and/or re-purposing:http://www.amazon.co.uk/dp/B01ACLYBIS…

  • The Psychosocial and Neurocognitive Impacts of Gaucher Disease, Type 1 on Pediatric and Young Adult Patients

    23 November 2015

    Researchers from Palo Alto University are seeking participants between the ages of 5-25 and their caregivers to take part in a study of the psychological and cognitive impacts of Gaucher disease, type 1. The researchers are Andrea Alioto, M.S. and …

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