Fundacion GIST Chile Advocacy in Chilewas invited by the Federation of Rare Diseases in Chile (FECHER) to participate in a meeting where the main topic was the need of a Rare Diseases Law in Chile.

The meeting took place in Santiago, in a building that for many years was the Congress venue, and still hosts main parliamentary activities.

Signing Agreement for Rare Diseases Law in Chlle

Piga Fernandez signs the agreement advocating for a Rare Diseases Law

Speakers at the meeting included Karol Cariola, President of the Congress Health Commission; Robinson Cristi, President of the Federation of Rare Diseases; Hugo Dolmesch, President of the Supreme Court of Justice; Jaime Burrows, Health Sub Secretary who represented the Health Minister who could not attend the meeting; Migdalia Denis, Member of the Rare Diseases International Committee; Angela Vivanco, Professor of Constitutional Rights for the Catholic University of Chile and Camila Quirland from the School of Public Health of the University of Chile.

Also in attendance were representatives from Patient Organizations and their deputies including Karla Rublilar, Javier Macay and Victor Torres.

At the conclusion of the meeting, all the participants signed a framework agreement by which we committed ourselves to advocate for a law for Rare Diseases in Chile.

Advocating in Chile

Camila Quirland, Piga Fernandez, Migdalia Denis and Deputy Karla Rulbilar

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.