News

Good news sharing - charitable access

13 March 2020

Sharing some good news with our Gaucher community...

Takeda’s Medical Expert Committee (MEC) have recently approved 17 Gaucher patients from Pakistan, Sudan, Tanzania and Tunisia on to their annual LSD Charitable Access Programme (CAP).

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IGA neuronopathic Gaucher Disease (nGD) Global Registry: patient community phase I final report

12 March 2020

Following on from the recent announcement about our letter of intent to partner with Kantar to manage the day to day running of the IGA’s neuronopathic Gaucher disease patient registry and our subsequent Facebook Live session with Tanya …

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Postponement of IGA Biennial Meeting in response to concerns over COVID-19

10 March 2020

Given the current concerns re COVID-19 and the travel bans already in place in some areas the IGA board has taken the difficult decision, in line with the EWGGD, to postpone the 2020 biennial members meeting to 10-11 October 2020. The venue will …

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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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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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