“We are not just talking about Biopharma Industries’ possibilities in these emerging markets,” said Sara Tylosky, CEO Farmacon Global. “It’s also about opportunities for patients of rare disease, advocacy groups and government representatives, so that everyone involved can move forward in unison today for solutions affecting better lives tomorrow.” Farmacon Global and UCSanDiego – Extension, have taken a leadership role in bringing this first Annual Rare Diem Assembly to life.
The Rare Diem Assembly will open with ‘The challenging patient journey in the search for an adequate treatment’ moderated by Dr. Daniel Mosquera, Medical Training Director, Farmacon Global, Colombia, with panelists Graciela Méndez, founder of the PAG ENLACE (Duchenne & Becker Muscular Dystrophy), Mexico, and Lic. Martha Herrera, Executive Director of FUNCOLEHF, Colombia, concerning difficulties rare disease patients face in their search for adequate treatment and how stake-holder organizations assist in this journey. ‘Structuring a diagnosis network for rare diseases in emerging markets’ will follow, led by Dr. Luis Squiquera, CMO Farmacon Global, Argentina, David Schlesinger, CEO Mendelics, Brazil and Dr. Elias Garica, President of the Mexican Association of Genetics, on opening lines of communication between stakeholders to improve the capacity for diagnosis and opportunities in the management of rare disease treatments.
Next ‘Current strategies to advance rare diseases therapy development in emerging markets’ will be moderated by Dr. José Torres, Strategy Director, Farmacon Global, Peru, joined by panelists Thiago Nunes Senior Medical Director Mirum, Pharma, Brazil, Scott Gray CEO Clincierge, United States, and Maria de San Martin Executive Director, ‘Donde Quiero Estar’, Argentina, each providing a unique perspective on regulatory aspects, difficulties and strategies. The Rare Diem Assembly will wrap-up with ‘Breaking down barriers in access to treatments in emerging markets’ led by Sara Tylosky, CEO Farmacon Global, joined by Dr. Víctor Zamora Mesía, Former Minister of Health, Peru and Antoine Daher, President Casa HUNTER, Brazil, to consider the main barriers in improving access to rare disease treatments and research in these emerging markets. A goal of this year’s first annual event will be forming an advisory board to further combine strengths for an in-person Rare Diem Live Assembly in 2022. Become part of the conversation and ensuring opportunities in your field. This year’s sponsors include Clincierge, Mendelics, Miru and Travere Therapeutics.