France: A.F.P.G. “Ensemble contre le GIST”
Contact Information
Association Française des Patients du GIST « Ensemble contre le GIST »
Email: info@ensemblecontrelegist.com
Web: http://www.ensemblecontrelegist.com
Contact Person
Estelle Lecointe (President)
Organisation Profile
A.F.P.G. « Ensemble contre le GIST » was created in October 2005, several months after Estelle’s own GIST diagnosis. The main objectives of this organization consist in providing patients, caregivers and non specialist doctors a good level of information regarding:
- GIST tumours
- their management
- the various treatment options
In order to improve the level of knowledge on this rare cancer, A.F.P.G. « Ensemble contre le GIST » has developed several documents with the help of the French Sarcoma Group. These leaflets are disseminated in every French Cancer treatment centers.
These last years, A.F.P.G. « Ensemble contre le GIST» has been highly involved in the field of compliance, notably developping a specific brochure: «Compliance with treatment: be an active partner in your GIST care everyday» which has been translated in 12 different languages with the help of Conticanet and SPAEN so as to raise people’s awareness on this topic all over Europe and beyond. Following these brochures, Conticanet and A.F.P.G. « Ensemble contre le GIST» launched in 2010 the «GIST International Survey on Treatment » so as to better understand patients’ behaviours and difficulties with treatment and to develop an appropriate therapeutical educational programme in a near future. Today, A.F.P.G. is member of different pharmaceutical advisory boards focusing on compliance and management of patients treated with targeted therapy.