- 25-04-2019April Newsletter
- 10-04-2019AVROBIO Explore Gene Therapy As a Potential Treatment For Gaucher Disease
- 26-03-2019March Newsletter
- 06-03-2019Election of New Chair and Vice-Chair
As a former pan-European group the IGA is keen to engage with all European institutions as well as other institutions around the world to ensure that Gaucher patients are represented at all levels. The IGA is fortunate that Dr Peter Liese MEP a Patron of the German patient group invited the Board of the IGA to formally launch the IGA at the European parliament in February 2009. A special meeting was held where the IGA's Chairman, Jeremy Manuel, presented the background of the IGA to assembled MEPS and guests. The Board were able to attend a plenary session of the committee on Environment Public health and food safety where relevant issues such as rare diseases and cross boarder healthcare were being discussed and took the opportunity to meet MEPs and representatives of the European Commission.
The IGA has attended meetings with EWGGD representatives to discuss the formation of a European Registry for Gaucher patients which is a goal of both bodies.
The IGA is actively working with the European Medicine Agency (EMA) and board members have given evidence before the Committee for Orphan Medicinal products and have engaged with officials for the benefit of Gaucher patients.