On November 16, representatives of 10 countries, and Susana Sarabia from The Max Foundation, got together in a teleconference conducted by Vicky Ossio, Alianza GIST Coordinator, and Sara Rothschild, LRG Global Relations Director. Despite the difference in hours, all participated with great enthusiasm. Many key topics were discussed. Sara Rothschild gave an update of the GIST Tour recently held in Brazil and Argentina, an event hosted and sponsored by Novartis to local physicians. Alianza GIST sent informational materials and Melisa Biman from Asociación GIST Argentina spoke at the event in Argentina. In both countries, doctors participated with great interest.

Of great importance was an update from Rodrigo Salas, President of Fundación GIST México and director on the LRG Board. He gave an update about the online GIST course by Instituto Tecnólogico de Monterrey (TEC) that gives CME credit to doctors (CME credit refers to a specific form of continuing education that helps those in the medical field maintain competence and learn about new and developing areas of their field). He explained how well it has worked in Mexico and the great possibilities of repeating this model in other Latin American countries.

Access to treatment was also discussed in depth. This topic will be a major focus at the next Alianza GIST meeting, as well as the next New Horizons international GIST meeting. All representatives agreed on the importance of gathering information about treatment access in the different Latin American countries in order to have a clear image of the situation in each country.

Fundraising was another topic discussed. Because of the need of funds to develop our projects, all representatives were invited to give their fundraising ideas.

As the next issue of the Alianza GIST newsletter is coming up, we expect to have interesting articles in it, and representatives have agreed to send articles on topics such as patient experiences, cases of misdiagnosis, advocacy, and access to treatment, among others.

The last topic discussed, although not the least important, was the great news of our new website which will be launched shortly.

Our next Alianza GIST meeting is going to be held March 26-28, 2012. The location has not yet been determined, but we are working to make it possible for all representatives to participate.

Piga Fernández
Author: Piga Fernández

Piga Fernández, Santiago, Chile, is a Global Relations Consultant since 2009 for the Life Raft Group , a GIST Patient Organization. She founded and is the Executive Director of Fundación GIST Chile, a nonprofit organization dedicated to support GIST and other gastrointestinal patients through education, information, emotional support and advocacy, with the goal of having them experience a better quality of life. Additionally, She is also the Coordinator of Alianza GIST, a consortium of GIST groups in Latin America. Her advocacy efforts in Chile have led to important changes in her country, impacting both legislative change and raising awareness for rare diseases. A GIST patient who was diagnosed incorrectly in 1995 with leiomyosarcoma, she understands the importance of correct diagnosis and access to treatment. She plays an integral role in working with our international patients, to assure they receive the quality of care necessary to survive and thrive.