“We’ll be looking at the problem of rare disease challenges from the inside out,” said Antoine Daher, founder of Casa Hunter, president of Febrararas, the Brazilian Federation of Rare Disease Associations, and a member of the Rare Diseases Commission of the Federal Council of Medicine in Brazil, and president of Casa dos Raros in Brazil.
He helped pass different resolutions regarding rare disease such as Anvisa RDC 204 e 205/2017, that provides priority to registration petitions, post-registration and prior consent in clinical drug research and establishes a special procedure for approval of clinical trials.
He is also involved in resolution 260/2018 regarding advanced research therapy products in Brazil. His passion for solutions arose when his son was diagnosed with Hunter Syndrome (MPS II). “From the initial feelings of isolation with a rare disease diagnosis to finding medical and community solutions including creating needed legislation, I understand the complicated issues of living with rare diseases from the inside out.” Daher will bring this perspective for both patients and the medical and pharmaceutical communities to Farmacon Global and the University of California San Diego – Extension on September 9th, during RARE DIEM 2021, the first (virtual) assembly, for “Seizing Opportunities for Rare Diseases in Emerging Markets.”
“What’s important today in the rare disease emerging market segment in science and pharmaceutical applications is engagement that elevates the patient’s voice,” said Sara Tylosky, CEO, Farmacon Global, a company with a specialty in strategic CRO solutions in Latin American. “Emerging markets can be thought of as geographical, but in rare disease study for potential solutions, it is more personal and can be better accessed through organizations and networks wherever they are found. This is why this our Rare Diem Assembly is going to be inclusive and accessible for those people and their families struggling with a rare disease from across the U.S. to Latin America. Our medical communities need to hear these voices now, to create solutions for tomorrow.”
“In juxtapositioning research into rare disease with sensitivity to patient needs, we have designed our panel discussions to feature rare disease patients, patient advocacy leaders, medical experts, pharmaceutical stakeholders, CRO professionals, and government representatives together in conversations to learn what’s working and what’s not
in pursuing our mutual goals of discovering needed pathways to bringing pharmaceutical solutions and expert care quickly to this often under-served population,” said Tylosky, CEO, Farmacon Global.
“Farmacon Global is excited to partner with the University of California San Diego – Extension on September 9, from 8:00 am – 12:00 pm, Pacific Time to present this virtual event. We will be seeking a board this year for next year’s ‘in-person’ conference and are pleased that Antoine Daher will bring his vast experience to this new board,” concluded Tylosky. For more information on participation with Rare Diem Assembly “Seizing Opportunities for Rare Diseases in
Emerging Markets” contact Sara Tylosky, Farmacon Global CEO.