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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Nieuws En Evenementen
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 webinar
28 April 2020
One of the challenges that the COVID19 situation has brought to Gaucher patients is receiving ERT infusions and at the recent EWGGD webinar recommendations were made to provide home treatment wherever possible.
A Zoom meeting has been set up for …
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 …
Biennial Members Meeting
16 April 2020
Notice is hereby given that the Biennial General Meeting of the International Gaucher Alliance will be held online via Zoom on Saturday 23 May 2020 at 7pm (UK time).
Details of the meeting including resolutions and business to transact have been …
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 …