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 vertegenwoo
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Evenementen
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 …
Biennial Members meeting: Our members share best practice and highlight challenges – coming together as a community
2 October 2020
Following the postponement of our face-to-face Biennial members meeting this year in Leiden, we are excited to share with you the details of our virtual meetings taking place in October which you can book on to now…
The …
Biennial Members meeting: How we are working to improve the lives of the global Gaucher community
2 October 2020
Following the postponement of our face-to-face Biennial members meeting this year in Leiden, we are excited to share with you the details of our virtual meetings taking place in October which you can book on to now…
The first will take …
Digital Health Technology webinar
10 September 2020
As part of the IGA’s series of educational webinars we will be hosting one on the growing use of digital technology to capture patient data, empower patients to be more involved in their health journey, as well as recognise the anxiety and …
Extraordinary General Meeting
9 September 2020
On 30th September 2020 at 5.30 pm UK time the IGA will hold a short special general meeting (via zoom) to present to our members a number of changes to our constitution, which if approved will allow us to apply to become a registered charity in …
AAV Gene Therapy for neuronopathic Gaucher disease and Parkinson's disease with a GBA mutation
5 August 2020
Taking place on Monday 5th Ocober from 3-4:30pm (BST), this is the second in a series of educational webinars for our members on the latest developments in gene therapy will focus on AAV-based gene therapy and Prevail Therapeutic's approach …
IGD2020: Home Therapy webinar
5 August 2020
In view of the challenges many Gaucher patients have faced during the coronavirus pandemic, the focus of this year's IGD campaign is home therapy.
The second of our educational webinars on home therapy, this one will take place on 1 …
Ex vivo Gene Therapy for GD1
5 August 2020
The first of a series of educational webinars on the latest developments in gene therapy for Gaucher treatment, focusing on AVROBIO's lentiviral gene therapy, an ex vivo gene therapy approach for Type 1 Gaucher disease, will take place on …
EWGGD GD1 Guidelines
5 August 2020
IGA in collaboration with EWGGD to form a working group to develop International clinical management guidelines for type I Gaucher disease
On Monday 14th September at 3pm (GMT) the EWGGD/IGA will host a kick-off event to develop International …
Gaucher and Parkinson's disease: the early signs and risks to carriers
31 July 2020
We will have three panelists: prof Ari Zimran, prof Per Svenningsson and Dr Marco Baptista.
Researchers have linked Gaucher disease to a slightly increased risk of having Parkinson's disease later in life. This is also true for carriers, …