The cooperation between patients, doctors, researchers and pharmaceutical companies is essential in the development of new drugs especially orphan drugs. Pharmaceutical companies have an important role in the development, supply and services provided to Gaucher patients. Universial access to safe treatments for all Gaucher patients is critical.
Often due to local regulations and limited resources the local associations have limited contact and exchange of information with Pharmaceutical companies.
The IGA, as a global umbrella group of Gaucher associations, is in regular contact with its members. The information gathered from members provides wider understanding and knowledge of the issues and problems faced by those with Gaucher disease and their families.
Through dialog with pharmaceutical companies, the IGA is able to express the needs of our members and as such influence the quality of the company’s communications, services and products provided to Gaucher patients.
Interaction with pharmaceutical companies includes:
- Exchange of information
- Workshops, conferences and seminars together with the pharmaceutical companies, doctors and researchers (i.e. EWGGD)
- To communicate with pharmaceutical companies on humanitarian aid requests
- To communicate with pharmaceutical companies in case of crises (i.e. shortage in supply of the enzyme)
The IGA commits itself to adhering to the provisions of the code of practice in all its dealings with industry and is transparent in all financial activities.