Why do we need an international umbrella group?
The working together of Gaucher patient groups has already lead to consistency in treatment of certain manifestations of Gaucher Disease throughout Europe. Inspired by this and by their successes in achieving humanitarian aid for the most severe patients in Eastern Europe member countries of the IGA has grasped the challenge of collaboration for the further advantage of Gaucher Patients.
Although the most common Lysosomal Storage Disorder Gaucher Disease is very rare with an incidence of about 1 in 100,000 live births.
Patient Groups have worked closely together to share their experiences and to facilitate access to treatment. Scientists and Clinicians throughout the world increasingly collaborate both in research and in the development of strategies for the management of the disease.
Pharmaceutical companies are Global and clinical trials are frequently multi-centred with treatments being approved in different countries worldwide, while in others patients are not able to benefit from them.
Patient Groups throughout the world cannot work in isolation and their alliance by joining the IGA provides a clear global voice of representation and opportunity for advancement.