News & Events

Orphazyme phase 2 study of arimoclomol in Gaucher disease

24 June 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 …

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IGA and CENTOGENE Team Up to Ensure myLSDapp Provides the Highest Level of Patient Data Protection

15 June 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 …

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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 …

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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 …

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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 …

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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 …

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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 …

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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 …

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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 …

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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 …

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