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Partnering with IGA has opened opportunities for growth of our organisation. The support to BORDIS has resulted in creation of useful global networks. I have grown a lot as a leader and advocate for Gaucher and rare diseases patients. I work with amazing people from different parts of the world and my interactions with them has enabled me to believe in more possibilities.

Dr Eda Selebatso, Botswana

The IGA has worked closely with the national association in India- and has helped it grow from a group of patients and caregivers into a strong national organization, helping it become a leading LSD patient advocacy organization in India.

Manjit Singh, India

Our membership is only open to not-for-profit organisations which are under the control of patients, representing the interests of Gaucher patients (through either Gaucher patient groups or rare disease groups).

 

Any organisation which wishes to become a member will need to complete an application for membership which will be reviewed by the IGA's board of directors according to its internal procedure.  Additional information/clarification will be requested if:
a)    the applicant has indicated that there are other organization/s in their country that support patients with Gaucher disease and it is not clear how those organizations collaborate to benefit the patients in this country;
b)    the applicant has indicated that majority of its funding come from one single pharmaceutical company;
c)    the applicant refuses to disclose where its funding comes from;
d)    there is uncertainty as to who is leading/running the organization;
e)    there are doubts or lack of clarity that the organization is patient oriented;
f)    information has been provided that is inconsistent with information in the possession of the IGA Board or any of the Board members. 

 

The Board will only decide on an application once it has all the information needed to make a decision. The IGA is not be obliged to inform a declined applicant of the reason for its rejection.

 

If you have any questions about how to become a member of the IGA please contact Angel Jones.