Our History

From a small European network to a global Gaucher alliance

The International Gaucher Alliance has grown from a small network of European patient organisations into a global, patient-led organisation working with the Gaucher community around the world.

Our history has been shaped by people affected by Gaucher disease coming together to strengthen the patient voice and address the challenges facing the community.

Our Journey

Key Milestones in our history

1994

Where it began

Patient representatives join the first European Working Group on Gaucher Disease meeting in Trieste, Italy, bringing patients together with clinicians and scientists.

1997–2000

Building the patient voice

Patient representatives continue to meet at EWGGD meetings and discuss their shared priorities. In 2000, a dedicated day gives the European Gaucher Alliance space to collaborate.

2008

Becoming a formal organisation

EGA members vote to become a formally constituted organisation, elect a Board of Directors and incorporate the organisation in England.

2016

Becoming more global

Members give all member organisations equal rights, while representatives from India and Canada join the Board. This marks an important step towards becoming an international organisation.

2017

Working together

The EGA brings patients, clinicians, researchers and pharmaceutical industry representatives together to identify shared priorities for the Gaucher community.

2018

The International Gaucher Alliance

Members vote to adopt the name International Gaucher Alliance (IGA), reflecting the organisation's development into a global alliance.

2020

Charity status

The International Gaucher Alliance is granted charity status by the Charity Commission for England and Wales.

2024

30 years of patient advocacy

The IGA celebrates 30 years of global advocacy, support and collaboration for people affected by Gaucher disease. The anniversary year also sees the IGA develop its 2024–2029 Strategic Plan and launch the Gaucher Voices podcast.

Today

A global alliance in action

The IGA connects and empowers patient organisations, amplifies the patient voice and works with clinicians, researchers and partners to address unmet needs across the global Gaucher community. We also support patients and families who contact us for help, particularly where access to Gaucher expertise, diagnosis, treatment and care may be limited.

About IGA

Related Resources

Our history shows what can be achieved when patients, families and partners work together.

International Gaucher Alliance

Registered Charity Number: 1192011

Company Limited by Guarantee Registered in England & Wales No. 06653373

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