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Many physicians and scientists have played an active role in supporting and encouraging the work of patient groups. In 1994 the first meeting of the European Working Group on Gaucher Disease (EWGGD) was held in Trieste, Italy, and representatives of the known European patient groups including the Israeli Gaucher Association were invited to join with the doctors and scientists. Whilst the patient representatives understood relatively little of the detailed science discussed, their presence was encouraged by the professionals.

 

Patient representatives continued to attend EWGGD meetings in Maastricht, Holland, in 1997 and in Lemnos, Greece in 1999. During these meetings, the patient representatives took time to discuss their own priorities and concerns. It became apparent that the patient groups needed more time for discussion and at the fourth EWGGD meeting in Jerusalem, Israel (2000), a separate day was set aside for a special European Gaucher Alliance (EGA) meeting. Thereafter, at biennial EWGGD meetings the EGA have held their own separate meetings to discuss issues of common interest.

 

At the EWGGD meeting in Budapest in June 2008, members of the EGA voted to become a formal constituted organisation and elected a board of directors. The EGA then become an incorporated limited company registered in England. In addition to the original founding associations of the EGA, ‘full membership’ was available to all European ‘not for profit’ Gaucher organisations or umbrella groups representing the interest of patients suffering from rare diseases, which included Gaucher disease and were under the control of patients. Patient groups from non-European countries could apply to be ‘associate’ members but did not have voting rights.

 

During the 2016 biennial meeting in Zaragoza, Spain, members of the EGA voted to remove the difference between ‘full’ and ‘associate’ members so that all adopted members of the EGA had equal rights and could vote and be part of the board. This vote was the first step to the EGA becoming an international organisation, and two additional representatives from India and Canada were co-opted on to the board. Over the next two years the board worked to develop a vision, mission and proposed new structure to take the IGA forward to serve the global Gaucher community to meet their needs and address the challenges they face. During this time, the EGA also held a multi-stakeholder meeting in October 2017 that bought together all the key stakeholders from the Gaucher community including clinicians, researchers and representatives from the pharmaceutical industry.  This first of its kind meeting identified the key focus areas for each of the stakeholders and a consensus was developed on those areas that the community could work on together. This information along with the interviews and online questionnaires undertaken by the EGA with our members association has shaped the IGA’s 5-year strategic plan.

 

In Riga, October 2018 at the biennial members meeting, we took the next steps in becoming a global organisation by announcing our new name: International Gaucher Alliance (IGA) which was voted for by our members and revealing our new logo.

 

In October 2020 the International Gaucher Alliance was granted Charity status by the Charity Commission of England and Wales.