Shire Marks 30th Anniversary with Innovative Global Program to Benefit Children with Rare Diseases

Shire Marks 30th Anniversary with Innovative Global Program to Benefit Children with Rare Diseases

February 9, 2016

Three-Year Initiative Supports Next Generation of Medical Geneticists and
Enables Children to Take Part in Life-Changing Camp Experiences

Lexington, Mass. – February 9, 2016 – To mark the company’s founding 30 years ago this year, Shire plc (LSE: SHP, NASDAQ: SHPG) is announcing 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 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 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.1

“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, Chief Executive Officer, 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,2 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 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.”

Responsibility at Shire
This new Future Generation initiative reflects Shire’s established commitment to doing business responsibly and ethically - and to create long-term value for all stakeholders.

“Beyond the financial contribution, Shire will actively seek ways to involve our employees, globally, in this game-changing initiative,” comments Brooke Clarke, Shire’s global head of Responsibility and Corporate Brand. “By dedicating their time and valuable expertise, Shire employees can broaden their impact on the communities we serve. We can only imagine the number of lives this program will touch.”

– END –

Notes to Editors

Contact: Brooke Clarke      
Email: [email protected]
Phone:  +44 (0) 1256 894829

About Shire

Shire enables people with life-altering conditions to lead better lives. Shire’s strategy is to focus on developing and marketing innovative specialty medicines to meet significant unmet patient needs. Shire’s focus is on providing treatments in Rare Diseases, Neuroscience, Gastrointestinal and Internal Medicine and we are developing treatments for symptomatic conditions treated by specialist physicians in other targeted therapeutic areas, such as Ophthalmics.

For more information, please visit Follow Shire on Social Media: @Shireplc, LinkedIn and YouTube.

About SeriousFun Children’s Network
SeriousFun Children’s Network is a global community of 30 camps and programs serving children with serious illnesses and their families, always free of charge. Founded by Paul Newman in 1988, SeriousFun has served more than 600,000 children and their families from more than 50 countries. Each member camp is an independent, not-for-profit organization dependent upon private funding to serve all children at no cost to their families. A Support Center raises funds and provides quality standards and services for all SeriousFun camps and programs. To learn more about SeriousFun, visit

About the ACMG Foundation for Genetic and Genomic Medicine
The ACMG Foundation for Genetic and Genomic Medicine, a 501(c)(3) nonprofit organization, is a community of supporters and contributors who understand the importance of medical genetics and genomics and genetic counseling in healthcare. Established in 1992, the ACMG Foundation supports the American College of Medical Genetics and Genomics’ mission to improve health through the practice of medical genetics and genomics by raising funds to promote the profession of medical genetics and genomics to medical students, to fund the training of future medical geneticists, to support best-practices and tools for practicing physicians and laboratory directors, to promote awareness and understanding of our work in the general public, and much more.

For more information, visit:

2American College of Medical Genetics and Genomics (ACMG)