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Nieuws

  • IGA co-authors a scientific paper titled 'The road to biosimilars in rare diseases – ongoing lessons from Gaucher disease

    6 April 2020

    As biosimilars become a 'hot topic' in the rare disease world, the IGA started to educate its members about them two years ago with a presentation from Prof Dingermann on what biosimilars are at our biennial members meeting in Riga, 2018. We …

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  • COVID-19: A statement from the EWGGD

    31 March 2020

    A statement from the EWGGD to our Gaucher community...

    "We hope that you are all well and managing in this time of unprecedented upheaval and uncertainty. We are sure that you as patients with Gaucher disease and clinicians caring for …

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  • Covid-19 - keeping in touch

    31 March 2020

    Dear members 

    As the COVID 19 pandemic continues, a lot of families in our community are facing different challenges and issues. This is a challenge but we all need to find strength in each other to adapt to this inevitable change that came …

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  • An update from the ORPHAZYME Advocacy Team

    30 March 2020

    A message from Orphazyme to the global community of patients, family members and healthcare providers impacted by the corona virus pandemic (COVID-19):  
     
    This is an uncertain and difficult time for us all. As we face these challenges, …

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  • An update from the TAKEDA Advocacy team

    30 March 2020

    Statement concerning the impact of SARS-CoV-2 (COVID-19) on the supply of treatment for persons with lysosomal storage disorders (LSDs), including Hunter syndrome (Mucopolysaccharidosis type II or MPS II), type 1 Gaucher disease, Fabry disease and …

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  • An update from the AVROBIO advocacy team

    25 March 2020

    "Given the healthcare resources required to manage COVID-19, a number of clinical trial sites worldwide have temporarily postponed elective procedures, including clinical trial activities. While we remain committed to moving our clinical …

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  • IGA's membership grows to 57 member associations

    23 March 2020

    We’re delighted to announce that Asociaţia Gaucher România/Romanian Gaucher Association has joined the IGA, bringing our membership up to 57 member associations from 54 countries:

    Fundatia Romana Pentru Bolile …

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  • COVID-19 : Supporting our members

    20 March 2020

    In these difficult times with the COVID 19, we are aware that different countries have different measures and recommendations to deal with the situation and support the health system and their citizens. 

    The IGA board members and our CEO are …

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  • March 2020 newsletter

    18 March 2020

    In our latest newsletter you can read the latest update on our global nGD patient registry, a report from the WORLDsymposium and how collaborative working is enabling patients to receive treatment through charitable access programmes.  …

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  • A message regarding the COVID-19 pandemic

    18 March 2020

    On behalf of the International Gaucher Alliance, we would like to express our support for those individuals and families already directly affected by COVID-19 around the world.

    We are conscious of the stress the pandemic is causing on people …

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