Fundacion GIST Chile was 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.
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.
Camila Quirland, Piga Fernandez, Migdalia Denis and Deputy Karla Rulbilar