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Noticias

  • New Croatian Gaucher Association joins the IGA

    22 July 2019

    We are pleased to announce that the Croatian Gaucher Association has now joined the IGA, taking our membership up to 52 member associations from 52 countries worldwide. (The Croatian Alliance for Rare Diseases remains a member of the IGA.)

     

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  • IGD Press Release

    17 July 2019

    Please click here to download a copy of the offical press release for International Gaucher Day on 1 October.  For more information, please conytact Jo Higgs on jo@gaucheralliance.org.

  • nGD poster presentation at the EWGGD

    8 July 2019

    Last week during the EWGGD in Clermont-Ferrand, our CEO Tanya Collin-Histed presented the poster on the IGA's global disease registry for neuronopathic Gaucher disease.

    Working in partnership with Aparito, the IGA acted as a lead instigator, …

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  • Jeremy Manuel is the IGA's rare star for IGD2019

    5 July 2019

    During the EWGGD meeting in Clermont-Ferrand, we unveiled our own Rare Star:Jeremy Manuel OBE in recognition of his 25 years' dedication to the global Gaucher community.

    Jeremy is featured on the 2019 poster which is now available to …

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  • Brazil to join the IGA

    26 June 2019

    We are pleased to announce that the Catarinense Association of Patients, Friends of Gaucher and Other Rare Diseases (Brazil) have now joined the IGA, taking our membership up to 51 member associations from 52 countries …

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  • 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 …

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  • 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 …

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  • 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 …

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  • 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