L’EGA è un gruppo ombrello pan europeo che rappresenta gli interessi dei pazienti Gaucher e quelli dei gruppi di pazienti Gaucher non a scopo di lucro in tutta Europa e altrove nel mondo.
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Notizie
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 …
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 …
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 …
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 …
IGA updates its Strategic Plan
10 novembre 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 novembre 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 …
IGA is granted Charity status
29 ottobre 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 …
Developing digital endpoints for the Gaucher community
15 ottobre 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 …
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 ottobre 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 …
Encouraging the voice of the patient in a new trial looking at in utero treatment for nGD at University of California San Francisco
13 ottobre 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…