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1994
1994

The EGA is founded

The European Gaucher Alliance is founded by patient groups from France, Israel, Italy, the Netherlands, Sweden and the UK

2000

The first EGA meeting is held

The first EGA meeting is held at the EWGGD in Jerusalem attended by 11 patient groups

2004

ECAP is launched

The EGA works with Genzyme to develop and launch the European Cerezyme Access Programme (ECAP), a humanitarian aid programme for patients in Eastern Europe to access life-saving treatment

2008

The EGA becomes a formal organisation

The EGA becomes a formal organisation and a board of directors was elected

2009

European Parliament

The EGA is formally launched in European Parliament

2011

Recognised by the EMA

The EGA receives recognition as a formal patient group by the European Medicines Agency (EMA)

2012

Go With Gaucher is launched

The first Go With Gaucher (GWG) meeting takes place in Frankfurt; a project to take forward the next generation of young Gaucher leaders

2013

EURORDIS membership

The EGA becomes a full member of EURORDIS

2014

International Gaucher Day

International Gaucher Day (IGD) is launched to raise awareness of Gaucher disease

2016

Going global

Members vote to remove the difference between ‘full’ and ‘associate’ members so that all members have equal rights, thus marking the first steps to becoming an international organisation

2017

Multi-stakeholder meeting

The EGA convenes a multi-stakeholder meeting in London, UK to identify the priorities for the global Gaucher community, attended by 17 key opinion leaders

2018

Regional manager programme

The IGA appoints three regional managers to increase its capacity and capability in South Asia and Eastern Europe

2018

EGA becomes the IGA

During the biennial members meeting in Riga, members vote to become the International Gaucher Alliance

2018

Rare Disease International

The IGA becomes a member of RDI

2019

nGD registry

The IGA launches Phase 1 of the development of a global patient registry for neuronopathic Gaucher disease to support a better understanding of the natural history of the disease

2019

Membership grows to 50

The IGA's membership reaches 50 associations representing 51 countries world-wide

2020

Partnership with Kantar

The IGA enters into a Letter of Intent with Kantar, to manage the day to day running of the IGA’s global neuronopathic Gaucher disease patient registry

2020

Charity status

The IGA is granted Charity status by the Charity Commission of England and Wales and is entered onto the Register of Charities

2021

GARDIAN is launched

The IGA and Kantar Health launch the disease registry GARDIAN: Gaucher Registry for Development Innovation and Analysis of Neuronopathic Disease.

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