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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COLLEGATI AD UNO DEI NOSTRI 41 PAESI MEMBRI PER SOSTEGNO, CONSIGLIO E NOTIZIE A LIVELLO LOCALE
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chiudi- Finland
- Norway
- Sweden
- Estonia
- Russian Federation
- Latvia
- Denmark
- Lithuania
- United Kingdom
- Netherlands
- Ireland
- Poland
- Germany
- Belgium
- Czech Republic
- Ukraine
- Slovakia
- Luxembourg
- Moldova, Republic of
- Austria
- France
- Switzerland
- Romania
- Slovenia
- Croatia
- Serbia
- Bosnia & Herzegovina
- Bulgaria
- Italy
- Macedonia, the Former Yugoslav Republic of
- Spain
- Greece
- Israel
Notizie
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…
AVAILABLE TO WATCH NOW: Ex vivo gene therapy for Type 1 Gaucher disease
5 ottobre 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 …
AVAILABLE TO WATCH NOW: IGD Home Therapy webinar
5 ottobre 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 …
MEMBERS REGISTER NOW for the EWGGD ECongress on 12 & 13 October
2 ottobre 2020
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.
- Under …
AVAILABLE TO WATCH NOW - Educational webinar: EWGGD GD1 guidelines
17 settembre 2020
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, …
AVAILABLE TO WATCH NOW - Educational webinar: Gaucher & Parkinson's disease
17 settembre 2020
If you missed the educational webinars on Gaucher & Parkinson's disease - the early signs and risks to carriers you can watch it now
A letter from Anne-Grethe Lauridsen
8 settembre 2020
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 …