News & Events

Would you like to join the IGA's board of directors?

25 February 2020

This year the IGA will be holding elections to form its new board ahead of the biennial members meeting and there are 11 vacancies to fill.  More details can be found by reading the newsletter which has just been sent to all our members …

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Kantar partnership announcement: Facebook Live session

5 February 2020

On Monday we announced our partnership with Kantar to manage the day to day running of the IGA’s global neuronopathic Gaucher disease patient registry.

Our CEO, Tanya Collin-Histed said “We are delighted that our vision of a global …

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2020 Biennial Members Meeting

4 February 2020

The IGA’s biennial members meeting and the 14th EWGGD congress will take place in Leiden, Netherlands from 23rd to 27th May 2020 and the IGA will be inviting one representative from each of its member associations to attend.  

(The …

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14th European Working Group on Gaucher Disease Congress

4 February 2020

The EWGGD has launched the website for its 14th European Working Group on Gaucher Disease Congress (EWGGD 2020) to be held from 24-27 May, 2019 in Leiden, The Netherlands.

It was 25 years ago when the EWGGD organised its first congress in …

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International Gaucher Alliance and Kantar Partnership announcement

3 February 2020

PRESS RELEASE 

3 February 2020

The International Gaucher Alliance (IGA) today announced it has entered into a Letter of Intent with Kantar, to manage the day to day running of the IGA’s global neuronopathic Gaucher disease patient …

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IGA's Membership Grows to 56 Member Associations From 54 Countries

23 January 2020

We’re delighted to announce that Humanitarna organizacija “Nada u bolji život”/Charity organisation “Hope for a Better Life has joined the IGA, bringing our membership up to 56 member associations from 54 countries:

…

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AVROBIO Announces Clinical and Regulatory Progress for Gaucher Disease Program

15 January 2020

AVROBIO has announced that it has received notice of clearance from the FDA regarding an Investigational New Drug (IND) application for AVR-RD-02, its investigational gene therapy for the treatment of Gaucher disease and has received consent from …

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PR001 Administered to International Type 2 Gaucher Disease Patient Via Compassionate Use Pathway

10 January 2020

Prevail Therapeutics has granted a compassionate use request for the administration of PR001 to a single patient with Type 2 Gaucher disease via a compassionate use pathway, following approval by an international regulatory authority, and the …

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Prevail Therapeutics is recruiting patients for PROPEL, a clinical trial testing an investigational gene therapy called PR001 to treat Parkinson’s disease in people with GBA mutations

8 January 2020

Prevail Therapeutics is recruiting patients for PROPEL, a clinical trial testing an investigational gene therapy called PR001 to treat Parkinson’s disease in people with GBA mutations. About 7 to 10 percent of people with Parkinson’s …

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December 2019 newsletter

17 December 2019

Our latest newsletter includes a report from the 5th International Gaucher conference on bone disease, the executive summary from the African Taskforce and a good news story from Sudan where the IGA was able to get treatment to a young girl.  …

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