News & Events

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 …

read more »

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 …

read more »

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 …

read more »

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 …

read more »

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 …

read more »

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…

read more »

AVAILABLE TO WATCH NOW: Ex vivo gene therapy for Type 1 Gaucher disease

5 October 2020

If you were unable to attend last month’s webinar about the latest developments in gene therapy for Gaucher treatment, we are delighted to share the recording which presented AVROBIO’s lentiviral investigational gene therapy, an ex vivo …

read more »

AVAILABLE TO WATCH NOW: IGD Home Therapy webinar

5 October 2020

We are sharing the IGD video on home treatment for those of you who missed it, or simply want to watch it again!  Thank you to those of you who were able to attend the webinar – it was great to see so many of you and to enjoy a good …

read more »

Newborn screening webinar

2 October 2020

Newborn screening is the process of testing newborn babies for serious, but treatable, conditions including Gaucher disease.  This webinar will present the basis, benefits, experiences and working with governments to get …

read more »