To mark the company’s founding 30 years ago this year, Shire plc is launching a new initiative designed to positively affect the lives of children born with rare diseases, as well as the future of rare disease care.
Shire’s Future Generation program, a 5 million USD initiative, launches today with two, global, three-year partnerships: one with SeriousFun Children’s Network, the community of camps and programs serving children with serious illnesses and their families; and the other with the ACMG Foundation for Genetic and Genomic Medicine.
“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,” says Shire CEO Flemming Ornskov, MD, MPH. “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.”
As a charity founded by actor and philanthropist Paul Newman, SeriousFun Children’s Network has earned the respect of caregivers around the world. With its annual gift of 1 million USD for the next three years, Shire will enable nearly 1,000 children, many with rare diseases, to attend these transformational camps. Research has shown the camps to build children’s confidence, expand their social network, and develop their capacity for resilience.
“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,” says Mary Beth Powers, CEO, SeriousFun Children’s Network. “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 support of the ACMG Foundation for Genetic and Genomic Medicine will fund 10 genetic fellowships which will begin to address the severe shortage of medical geneticists. In the US alone, there is only one geneticist for every 600,000 individuals, which is less than half of the projected workforce needed. The partnership between Shire and the ACMG Foundation will help foster a future generation of geneticists around the world who will be crucial in the diagnosis and care of patients with rare diseases. Shire’s grant to the ACMG Foundation is for 1.65 million USD over the next three years; the remainder of the Future Generation funding comprises other support programming for the initiative.
“We have reached a critical juncture in terms of the integration of medical genetics into health care,” says ACMG Foundation Executive Director Michael S. Watson, PhD, FACMG. “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 United States. 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.”
Says Ornskov, “Our grants will open doors to the training of a new generation of practitioners and will make a tremendous difference in the lives of children, their families, and the rare disease community overall for decades to come.”