Aventura, FL (March 5, 2020) – In observance of Rare Disease Day 2020, Biorasi, LLC held a company-wide event and fundraiser to raise awareness for Angelman Syndrome. The event took place on Friday, February 28, 2020, and 78 employees contributed over $4,000 to the Foundation for Angelman Syndrome Therapeutics (FAST).
“Every day we work alongside the most innovative, passionate companies in helping them bring critical treatments to patients with no other options,” said Lindsey Rios, Senior Vice President of Project Operations at Biorasi. “Today we come together to do our small part in raising awareness about the impact we can make in this community together.”
CEO Chris O’Brien, along with Rios, put together the initiative for the first Rare Disease Day observance at Biorasi. Sofia Puerto from Program Development and Joel Robinson from Project Management coordinated the event.
Rare Disease Day 2020 T-Shirt Design
Lead Graphic Designer, Carlos Llanos, designed t-shirts for the Rare Disease Day event. Employees were asked to add their hand print to the Rare Disease Day banner to signify awareness. There was also a presentation of a company video highlighting Biorasi’s commitment to rare disease research.
“My connection started when I was doing my Ph.D. thesis on Angelman Syndrome pathobiology and received the FAST post-doctoral fellowship in support of my efforts to develop one of the first biomarkers for Angelman Syndrome,” said Jimmy El Hokayem, Ph.D., Associate Director of Program Development and Head of the Neurology and Regenerative Medicine Center of Excellence. “In working closely with Dr. Paula Evans, FAST Chairperson, and Scientific Advisory Board Member Dr. Edwin Weeber, I experienced their commitment firsthand in finding treatments and making sure that they reached the clinics.”
Dr. Evans called in to the event to voice her support of the Biorasi initiative.
“We are honored to be the recipient of Biorasi’s generosity,” she said. “Oftentimes with rare disease it is the patient organization that drives the most critical research. We are proud to say that we have formed a non-profit organization, GeneTx Biotherapeutics, in order to begin clinical trials in March for the first disease modifying therapy for Angelman Syndrome. Donations from companies like Biorasi get us one step closer to life changing drugs for these children.”
Based on global statistics, more than 300 million people are living with one or more of over 6,000 identified rare or orphan diseases. Rare diseases currently affect between 3.5 to 5.9 percent of the world’s population. Rare Disease Day was developed to raise awareness for people living with rare diseases as well as their families and caregivers, to promote access to treatment and care, and to realize clinical research.
“Biorasi specializes is rare diseases and hard to recruit indications,” said O’Brien. “It is important for us to connect not just with the scientific aspect of rare disease but also with the human consequence of living with a condition such as Angelman Syndrome.”
For more information about Angelman Syndrome or to donate, please visit the Foundation for Angelman Syndrome Therapeutics.
About Rare Disease Day
A patient-led campaign, Rare Disease Day was launched by EURORDIS and its Council of National Alliances in 2008 and brings together millions of people in solidarity. EURORDIS coordinates the global community in organizing Rare Disease Day, which takes place on the last day of February each year to raise awareness of the impact that rare diseases have on over 300 million people around the world.
About Biorasi
Biorasi is a customer-focused, full-service, contract research organization (CRO) that optimizes the design and delivery of clinical trials for its sponsors, powered by our proprietary TALOS™ project management system. Pharmaceutical companies around the globe rely on Biorasi to consistently deliver success in clinical trial programs for rare and orphan disease and other hard to recruit patient populations such as precision medicine, as well as successful clinical trial rescue. Biorasi’s expertise includes a wide range of molecule types, therapeutic areas, and regulatory pathways. Biorasi is a leader in neurology, nephrology, dermatology, oncology, and the emerging digital therapeutics market.
Established in 2002, Biorasi is headquartered in Aventura, FL, with office-based teams around the globe. From its regional presences, Biorasi is able to directly support studies in the Americas, Europe, and APAC. The company has received the coveted CRO Leadership Award from Life Science Leader magazine and has been placed on the INC 500 list of fastest-growing companies in America.
To learn more about Biorasi’s mission and vision, including rare and orphan disease clinical trial project management and logistics, explore our solutions on our website or contact us at info@biorasi.com or (786) 388-0700.
