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Calls To Action In Rare Disease

The August 25th Rare Diem Rare Disease in Evolving Markets Conference, as organized by Farmacon Global and UC San Diego Extended Studies, generated positive commitment from many participants for an ongoing alliance for speeding rare disease solutions to patients through medical communities, the biopharma industry, government and advocacy groups as represented in the newly organized Rare Diem / Rare Disease Alliance.

“Over 375 people registered for the conference as rare disease presents opportunities for clinical trials to bring solutions to rare disease patients in evolving markets, such as Latin America where we maintain a network of highly qualified and involved professionals,” said Sara Tylosky, CEO, Farmacon Global.  “We will organize to host a Rare Diem / Rare Disease Alliance assembly quarterly to keep conversations and connections going, including overcoming political obstacles in studies, plus intricacies of enrollment in Brazil, Colombia, Mexico, Peru, Central America, Argentina, and Venezuela, including resources for working with PAGs, accessing PI’s, and sophisticated sites with KOL connectivity.  For example, there is an overall push to decentralize the sites and seek better reimbursement in all countries represented by experts at this conference. 

“There are over 7,000 rare diseases worldwide that need to be addressed. Challenges remain so we remain committed to bringing professionals together for these purposes, including avenues to decentralized studies with a gentle human touch and privacy, patient support through advocacy including access to highly specialized diagnoses. We welcome Dr. Víctor Zamora Mesía, Former Minister of Health, Peru, and Antoine Daher, President Casa HUNTER, Brazil to the Alliance and Harsha Rajasimha, Founder and CEO of Jeeva Informatics Solutions. Contact me if you would like to be part of the Rare Disease / Rare Diem Alliance for continued impact.”

For more information contact Sara Tylosky, CEO Farmacon Global.

Sara Tylosky, MBA
CEO

Sara Tylosky, MBA, CEO at Farmacon Global, brings over 20 years of experience leading teams in both large and small pharmaceutical and biotech environments. She has led Farmacon Global, a strategic CRO of medical consultants, in accelerating clinical trials, increasing diversity, supporting enrollment, and paving the way to market access in emerging markets.

Known for her high cultural intelligence and problem-solving skills, Sara and her team specialize in Rare Diseases, Immunology, Infectious Diseases, Cancer, and Vaccines. Fluent in Spanish and having lived on four continents, she has a special focus on Latin America while actively expanding into other key markets globally. Sara’s direction plays a pivotal role in steering Farmacon Global toward healthcare innovation and global market leadership.