L´EGA est une association européenne qui représente les intérêts des patients de Gaucher ainsi que ceux des associations de patients de Gaucher sans but lucratif en Europe et dans le monde entier.
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LIEN VERS UN DE NOS 41 PAYS MEMBRES POUR RECEVOIR DES CONSEILS LOCAUX ET DES NOUVELLES
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fermer- 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
Nouvelles & Événements
IGA is granted Charity status
29 octobre 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 octobre 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 octobre 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 octobre 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 octobre 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 octobre 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 …
Newborn screening webinar
2 octobre 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 octobre 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 octobre 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 …
MEMBERS REGISTER NOW for the EWGGD ECongress on 12 & 13 October
2 octobre 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 …