ECPC's member of the month February 2009 is:

ESTELLE LECOINTE

My Organisation

I’m President of the French GIST patient advocacy group : “Ensemble contre le GIST” which I created in October 2005 with the support of my oncologist. We have 4 main objectives:

• To inform GIST patients and caregivers about the disease
  
• to help them break out of their isolation and create a support network
  
• to develop knowledge of GIST among healthcare professionals and
  
• to promote medical and scientific research on GIST tumours in France

We have raised awareness of this and other rare cancers through various campaigns including TV and radio appearances. In 2008, I was nominated to join the Patient Committee of the National Cancer Institute so as to be the very first representative of patients suffering from rare cancers and to contribute to the writing of the next national cancer plan.

My story

I’m a French educational advisor who was diagnosed with metastatic GIST (which is a very rare digestive cancer) in June 2004 at the age of 29. Indeed, my first experience with GIST was in 1994 but I was misdiagnosed with a benign schwannoma as the gene responsible for GIST was only discovered in 1998. Therefore, I couldn’t get the appropriate follow-up and had two other relapses: one in 1995 and another one in 2004.

How to contact me

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www.ensemblecontrelegist.org

See also our previous ECPC Members of the Month.