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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Notizie
Online events - Autumn programme
6 agosto 2020
We are excited to share with you our schedule of virtual meetings taking place throughout the Autumn which you can easily book on to now...
Starting in September, we are offering a series of online educational …Educational webinars
31 luglio 2020
We will soon be sharing our schedule of virtual meetings taking place throughout the Autumn which you will be able to book on to...
We are very excited to be offering a series of online educational webinars for our …Home therapy with enzyme replacement therapy for Gaucher disease: a short statement from the European Working Group on Gaucher Disease (EWGGD)
30 luglio 2020
Statement on Home Therapy
Home therapy with enzyme replacement therapy for Gaucher disease: a short statement from the European Working Group on Gaucher Disease (EWGGD)
Since the availability of enzyme replacement therapy for Gaucher disease …
IGD Home Therapy Photo Competition
22 luglio 2020
#IGD2020 will focus on home therapy and our campaign will be totally online with no printed materials or merchandise.
We will be producing an online poster which can be shared on social media to promote the day and to raise awareness and would …
AVROBIO Announces New Patients Dosed in Gaucher Disease and Cystinosis Clinical Trials
6 luglio 2020
AVROBIO has announced that the first patient has been dosed in their Phase 1/2 GuardOne trial of AVR-RD-02, AVROBIO’s investigational gene therapy for Gaucher disease type 1.
Our CEO Tanya Collin-Histed says "This is exciting news for …
Orphazyme phase 2 study of arimoclomol in Gaucher disease
24 giugno 2020
Sharing news from Orphazyme A/S, our CEO Tanya Collin-Histed writes:
“The news is a step forward for Gaucher disease patients and their families. We are excited to hear that there was evidence of arimoclomol’s ability to cross the …
IGA and CENTOGENE Team Up to Ensure myLSDapp Provides the Highest Level of Patient Data Protection
15 giugno 2020
The International Gaucher Alliance (IGA) has teamed up with CENTOGENE to review the data protection measures of myLSDapp. The collaboration not only ensured high levels of security, but led to further adaptations of the patient consent forms related …
Minutes from IGA's Biennial General Meeting
29 maggio 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 maggio 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 maggio 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 …