Nieuws En Evenementen

Vaccination program for COVID-19 in patients with Gaucher disease

14 January 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 January 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 December 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 November 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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IGA updates its Strategic Plan

10 November 2020

Following a review by the board and taskforce members, we are delighted to present our updated strategy, based on our strategy developed in 2018.  Read more here.

WATCH NOW: New born screening webinar

4 November 2020

The IGA's webinar on newborn screening was chaired by Aviva Rosenberg and our panelists were Dr Juana Inés Navarrete MD Head Department of Genetics Hospital Central Sur PEMEX and Professosr of Genetics Faculty of Medicine Universidad …

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IGA is granted Charity status

29 October 2020

We are delighted to announce that on the 27th October the International Gaucher Alliance was granted Charity status by the Charity Commission of England and Wales and has been entered onto the Register of Charities with the Registered Charity Number …

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Developing digital endpoints for the Gaucher community

15 October 2020

Aparito Limited, a med-tech company developing innovative digital endpoints to support remote patient data capture has worked extensively with the wider Gaucher community to develop disease specific digital endpoints to support patients.  Read …

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AVAILABLE TO WATCH NOW: AAV-based gene therapy and Prevail Therapeutic's approach for neuronopathic Gaucher diseases & Parkinson's disease with a GBA mutation

15 October 2020

The second in a series of educational webinars for our members on the latest developments in gene therapy focused on AAV-based gene therapy and Prevail Therapeutic's approach for neuronopathic Gaucher disease and Parkinson’s disease with a …

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Encouraging the voice of the patient in a new trial looking at in utero treatment for nGD at University of California San Francisco

13 October 2020

Encouraging the voice of the patient in a new trial looking at in utero treatment for nGD at University of California San Francisco, the IGA are supporting this work through disseminating this short survey to the global community.

ABOUT THE STUDY…

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