Angela P. Chaves R.

President Executive

FEDERATION COLOMBIANA DE ENFERMEDADES RARAS

Angela Chaves is the President and Founding Member of Colombian Federation of Rare Diseases, President and Founding Member of LAES Leukodystrophies Foundation, Coordinator of the Latin American Network of Rare Diseases HACER.LA. Her constant promotion and participation of spaces for formulating public policy on Rare Diseases have allowed the following developments: The definition of the List of Rare Diseases in Colombia with more than two thousand diseases including, the first census of rare diseases with the identification of more than thirteen thousand patients, the start of the epidemiological surveillance of rare diseases in 2016 and the development of the National Plan for Rare Diseases beginning in 2016. The Recognition of her as an Opinion Leader and the Colombian Federation of Rare Diseases as a major player in each of the spaces where it formulates public policy in health, being consulted at the Ministry of Health, the Superintendency of Health, the Institute of Child Protection, the Colombian Agency for Evaluation Health technology and The Congress, among others. Her experience with Rare Diseases -specifically with Leukodystrophy, her professional training, the detailed study of the problem and her social commitment, allow her to lead projects related to this issue. Her goals are to transform the reality of those affected by Rare Diseases in Colombia and Latin America, working hard on the visibility, education, Knowledge Management as well as the impact of RD as a social phenomenon, besides defending the patients’ rights.
Webinars Conducted By Angela P. Chaves R.
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