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De EGA is een pan-Europese umbrella groep die de belangen vertegenwoordigt van Gaucherpatienten en Gaucherpatientgroepen in Europa en elders in de wereld. Lokale patientgroepen kunnen in afzondering niet effectief werken. De EGA bied een goede vertegenwooNederlands ▼ login ▼
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 …
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 …
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, the IGA are supporting this work through disseminating this short survey to the global community.
ABOUT THE STUDY…
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 …
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 …
The European Working Group for Gaucher Disease (EWGGD) has invited the IGA and its members to take part in its E-Congress on 12 & 13 October.
The deadline for registering is Sunday 11th of October.
The EWGGD and IGA recently co-hosted a webinar to set the scene to explore what should be included in new international patient centric guidelines for Type 1 Gaucher disease. The webinar recording can be watched here.
Following this, …
If you missed the educational webinars on Gaucher & Parkinson's disease - the early signs and risks to carriers you can watch it now
Dear friends, IGA members and everyone else involved in the Gaucher community... it is with great sadness and a heavy heart that I write this message to you all.
Due to serious health issues I have taken the very difficult and yet easy decision …