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News
Minutes from IGA's Biennial General Meeting
29 May 2020
A note from our Chair:
Thank you to all those who attended the IGA’s Biennial General Meeting on the 23rd of May, 2020. It was our pleasure to see all of you virtually and we appreciate that you decided to spend Saturday …
COVID-19: IGA and European GD Network Gaucher Research Survey
29 May 2020
Calling all Gaucher patients
We would like to ask you to complete the following patient survey to help us understand the impact of the disease on Gaucher patients, their families and supporters and to provide invaluable research data with the …
The IGA initiates a global discussion on home therapy for Gaucher patients
14 May 2020
A Zoom meeting was held for our members on Friday 1 May to share best practice regarding home therapy, hosted by Fernanda Torquati and Kate Theochari who have both been active in their home countries of Italy and Greece respectively in lobbying …
AVROBIO to Collaborate with Saladax Biomedical
12 May 2020
AVROBIO has announced a partnership with Saladax Biomedical to develop a new blood test that will simplify and streamline therapeutic drug monitoring (TDM) during the conditioning phase of the lentiviral gene therapy process.
Full details can be …
COVID19 & home treatment
28 April 2020
The International Gaucher Alliance is an umbrella organization with more than 50 members all around the world. The IGA represents the interests of the Gaucher Community.
Gaucher disease is a rare disease with an incidence of about 1 in …
Notes from the EWGGD webinar on 1 April
15 April 2020
Self-isolation:
Follow Ministry of Health guidelines for individual countries
Gaucher patients with co-morbidities and chronic illnesses have been advised to self-isolate
Patients with underlying lung disease or splenectomy or other …
Results of the IGA's Board Election
14 April 2020
Following the recent IGA board elections, we are delighted to inform you that we will have eight board directors of IGA:
- Suyog Sathe (India)
- Yoram Muller (Israel)
- Anne-Grethe Lauridsen (Denmark)
- Biljana Jovanovic (Serbia)
- Aviva …
The IGA has co-authored 'The Definition of Neuronopathic Gaucher disease'
7 April 2020
The IGA has co-authored an article 'The Definition of Neuronopathic Gaucher disease' published in the Journal of Inherited Metabolic Disease.
CEO, Tanya Collin-Histed writes "Proud to have been a part of this publication. These …
IGA co-authors a scientific paper titled 'The road to biosimilars in rare diseases – ongoing lessons from Gaucher disease
6 April 2020
As biosimilars become a 'hot topic' in the rare disease world, the IGA started to educate its members about them two years ago with a presentation from Prof Dingermann on what biosimilars are at our biennial members meeting in Riga, 2018. We …
COVID-19: A statement from the EWGGD
31 March 2020
A statement from the EWGGD to our Gaucher community...
"We hope that you are all well and managing in this time of unprecedented upheaval and uncertainty. We are sure that you as patients with Gaucher disease and clinicians caring for …
