EGA Biennial Meeting/ 12th EWGGD Conference 2016:

Hon. President Mr. Manjit Singh and Mr. Suyog Sathe had the opportunity to represent LSDSS at the EGA Biennial Meeting/12th EWGGD Conference 2016, from June 27 to July 02, 2016, at Zaragoza, Spain.

The EGA meeting included various presentations and sessions on different activities carried out by the EGA for the welfare of Gaucher patients worldwide. One of the most important highlights of this meeting was the board's proposal to amend the EGA's constitution to enable it become a global organization, rather than being limited to Europe, thereby dissolving the differences between Full and Associate Members. Majority of the Full members voted in favour of changing the constitution, which now makes EGA a global organization. More importantly, this also makes associate members such as India Full Members of the EGA, giving rise to a possibility for India to be a part of the EGA board in future.

Another highlight of the meeting was the opportunity to interact with officials of Genzyme, Shire, Pfizer and Orphazyme. LSDSS, led by Hon. Pres. Manjit Singh strongly advocated their cause and strived hard to convince these companies to accept more Indian patients into their humanitarian access programmes. Although Genzyme and Shire conveyed their inability to accept new applications into their humanitarian programmes, LSDSS, under significant guidance and support from Tanya Collin (EGA), succeeded in convincing Pfizer to recruit 4 more patients from India into their humanitarian progamme, in addition to the 2 patients previously committed by them. This will enable a total of 6 Indian Gaucher patients to access treatment from Pfizer free of cost.

The next meeting is proposed to be held in 2018 in Sweden.

EGA Biennial Meeting/ 12th EWGGD Conference 2016: Spain

MPS 2016 : Germany

 
 

 

 

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