Shire, a company dedicated to providing treatments for rare diseases, neuroscience, gastrointestinal and internal medicine, has launched the Shire Future Generations program.
This initiative, a $5 million investment that began as a way to celebrate Shire's 30th anniversary, is designed to provide positive experiences for children living with rare diseases and support the development of therapies for rare diseases.
Two agencies, the Serious Fun Children's Network and the ACMG Foundation for Genetic and Genomic Medicine, have both been awarded grants through the initiative.
“As a company fast becoming the leading global biotechnology company focused on rare diseases and specialty conditions, we are passionate about making a meaningful -- and lasting -- difference in the lives of patients,” Shire CEO Flemming Ornskov said. “In this, our 30th year, we want to celebrate our past by making a commitment to the future of the rare disease community. We are very proud to be teaming up with these two great organizations, which will help ensure a bright future for the patients and physicians we are privileged to serve.”
The Serious Fun Children's Network gives ill children the chance to have new experiences.
“The generous grant from Shire will enable campers coping with rare illnesses to have a life-changing experience at camp and help their families to bond through Family Weekend programs,” Mary Powers, CEO of Serious Fun Children’s Network, said. “In addition, educational opportunities, made possible thanks to Shire, will strengthen the ability of our camps to serve children living with rare diseases.”
Shire’s grant to the ACMG Foundation for Genetic and Genomic Medicine will fund 10 genetic fellowships.
“We have reached a critical juncture in terms of the integration of medical genetics into health care,” ACMG Foundation Executive Director Michael Watson said. “Though geneticists are essential to the diagnosis and management of rare diseases and for the care of individuals with genetic conditions, we are faced with a significant deficit in the number of laboratory and clinical geneticists in the U.S. Shire’s grant supports the ACMG Foundation/Shire Laboratory Geneticist Fellowship Awards and Clinical Genetics Residency Program and will directly help grow the genetics workforce, which will directly benefit patients and their families dealing with rare genetic diseases.”
