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Notizie

  • Become an IGA Volunteer

    17 marzo 2021

    We need volunteers to join us and support us in successful achievement of our goals and 2021 work programme.  We have several opportunities open at this moment so please take a look and let us know if you are available to volunteer for us.

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  • February 2021 newsletter

    8 marzo 2021

    Sharing our latest newsletter which includes details of our first webinar for 2021, a message of thanks from a young Jordanian patient and the publication of our latest GD booklet to mark Rare Disease Day 2021

    You can read the newsletter in full

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  • Gaucher disease booklet

    22 febbraio 2021

    To mark Rare Disease Day 2021, we are pleased to publish our new information booklet on Gaucher disease Types 1, 2 and 3: DOWNLOAD THE BOOKLET HERE

    We have developed this booklet as a source of information for patients and their carers and to …

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  • PR001 in development by Prevail Therapeutics

    4 febbraio 2021

    PR001 in development by Prevail Therapeutics

     

    Prevail Therapeutics, a wholly-owned subsidiary of Eli Lilly and Company, is developing an investigational gene therapy called PR001 that has the potential to slow or stop the underlying …

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  • January 2021 newsletter

    19 gennaio 2021

    Our first newsletter of 2021 is now available to read, sharing with you the opportunity to get involved in our Gene Therapy focus group and a joint statement with the EWGGD on COVID-19 vaccinations for patients with Gaucher disease.

  • Gene Therapy Focus Group

    14 gennaio 2021

    The IGA is looking for Gaucher patients and parent/caregivers to join a focus group to discuss gene therapy. We are seeking to understand the concerns and questions the community has around this potential new treatment. The focus group will last for …

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  • Vaccination program for COVID-19 in patients with Gaucher disease

    14 gennaio 2021

    The EWGGD and IGA are standing together with the Gaucher patients’ community in this challenging time of the COVID-19 pandemic, and we are strongly supportive of the vaccination program for COVID-19 and hopes that any patient who is offered …

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  • A Charitable Access Program for patients with lysosomal storage disorders in underserved communities worldwide

    8 gennaio 2021

    A paper on a Charitable Access Program for patients with lysosomal storage disorders in underserved communities worldwide has now been published online on the Orphanet Journal of Rare Diseases (OJRD) website.

    IGA's CEO, Tanya Collin-Histed …

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  • December newsletter and office opening hours

    8 dicembre 2020

    Seasonal greetings from all of us here at the IGA…

    2020 has been a difficult year for us all - but one that has brought us closer as a community, so thank you to everyone for their support and for following us here on social media, helping …

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  • WATCH NOW: Digital health technology webinar

    11 novembre 2020

    If you missed the last of our educational webinars for 2020 which focussed on digital health technology, you can watch it here

    Our thanks to Aparito, Backpack and Patient Discovery who presented their technologies and demonstrated how …

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