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News

  • 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

  • Rare Disease Day 2018 28 February

    15 January 2018

    The Theme for Rare Disease Day 2018 is Research, continuing on from 2017.

    Rare disese research contributes to the development of diagnostic tools, treatments and cures, as well as improved health and social care for patients and their families.

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  • Seasons Greetings and Office Opening Hours

    19 December 2017

    During the festive period, the EGA office will be closed from 14:30 on Wednesday 20 December until 9:00 on Tuesday 2 January 2018.  If you have an urgent enquiry please email Tanya on tanya@gaucheralliance.org.

    The EGA would like to wish all …

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  • International Gaucher Day 2017. A great success.

    3 October 2017

    We just wanted to thank everybody that made International Gaucher Day 2017 a huge success and to remind you to share your photos and stories with us.  I hope that you all enjoyed the day and celebrated in some fine style.  My personal …

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