rare diseases

Listening and Learning From the Rare Disease Patient

By Anne-Marie Law Chief Patient and Employee Experience Officer at Alexion Pharmaceuticals, Inc.
Article

In the world of rare diseases, where so many conditions remain undiagnosed and untreated, we take seriously the opportunity to really listen to and learn from patients and caregivers and their healthcare providers. At Alexion, innovation includes really focusing our collective efforts to strive toward understanding patients’ needs, including meaningful therapies and beyond. We are focused on innovating in all we do to improve the day-to-day experience of people living with a rare disease.

Shire and SeriousFun Camps Help Children with Rare Diseases Discover Hope

Multimedia with summary

For hundreds of thousands of children living with serious illnesses and their families around the world, a serious illness can disrupt their childhood and add strain to families. But for those children living with rare diseases and their families, the experience can be even more challenging and isolating. That’s where camp comes in.

Shire’s Partnership with SeriousFun Children’s Network Enabled Nearly 1,000 Children with Serious Illnesses to Attend Life-Changing Camps

Blog

SeriousFun Children’s Network, founded by actor and philanthropist Paul Newman, provides fun, life-changing camp experiences to children living with serious illnesses and their families throughout the world—totally free of charge. These medically safe, inclusive experiences allow campers to connect with peers and build confidence, empowering them to value the possibility and potential of their lives beyond camp—and beyond their illnesses.

Shire Commitments to Support Patients as Part of Responsibility Strategy

Article

At Shire, supporting patients is at the heart of being a champion for patients. Beyond discovering and developing medicines, we are committed to dramatically shortening the time to diagnosis for rare diseases, and we aim to support patients along the entire patient journey, from conducting clinical trials to enabling patients to better manage their care through the use of innovative digital technologies, and beyond.

The ACMG Foundation for Genetic and Genomic Medicine Announces the Four Recipients of the 2018 Shire/ACMG Foundation Next Generation Fellowship Awards

Press Release

BETHESDA, MD – April 27, 2018 /3BL Media/ -- Four recipients of the Shire/ACMG Foundation Next Generation Fellowship Awards were announced during the American College of Medical Genetics and Genomics (ACMG) 2018 Annual Clinical Genetics Meeting in Charlotte, North Carolina. The four awards were the second set of awards given after Shire made a $1.65 million commitment in 2017 to support the training of future medical geneticists.

Shire Commits to Long-term Responsibility Goals in 2017 Annual Responsibility Review

Press Release

CAMBRIDGE, Mass., March 22, 2018 /3BL Media/ – Shire plc (LSE: SHP, NASDAQ: SHPG) today announced the release of the Company’s 2017 Annual Responsibility Review. The Review, available at shire.com/responsibility outlines Shire’s new Responsibility strategy that includes ambitious long-term goals to be achieved by 2025, aimed at further enhancing the Company’s commitment to Responsibility and positively impacting patients, our employees, and our communities.  

Shire and SeriousFun Children's Network Celebrate Two Years of Partnership

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In February of 2016, we committed $3 million over three years to SeriousFun Children’s Network. Our support will enable nearly 1,000 children, many with rare diseases, to attend SeriousFun’s transformative camps and programs free of charge. This is a look at our partnership in year two!

Our volunteers had this to say (and more) in the video above:

"What I experienced at camp was beyond my expectations."

"Every camper was made to feel that FUN was the most important goal (of the day)."

"The campers attitudes and strength were absolutely contagious."

Shire: Innovative Therapies for Rare Diseases

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Shire is the global leader in serving patients with rare diseases. We strive to develop innovative therapies across a core of rare disease areas, supplemented by diversified capabilities in highly specialized conditions. We feel a strong sense of urgency to address the high unmet medical needs of these patient communities.

To learn more, visit www.shire.com.

PatientsLikeMe and Shire Pharmaceuticals Collaborate to Study Rare Genetic Diseases

Press Release

CAMBRIDGE, Mass., April 18, 2017 /3BL Media/ -- PatientsLikeMe and Shire plc have announced a new collaboration that will support the development of a patient-centered, real world health learning system that expands understanding of patient health and disease. Philip Vickers, PhD, Head of Research and Development for Shire, said working with PatientsLikeMe will help the company overcome some of the traditional challenges inherent in understanding rare diseases.

Shire Partners with The ACMG Foundation for Genetic and Genomic Medicine

Blog

Across the U.S., there is a significant shortage of medical geneticists. With only one geneticist for every 600,000 individuals, the U.S. has less than half of the genetic workforce it needs. As an issue directly related to our business, we announced a $1.65 million grant to the ACMG Foundation for Genetic and Genomic Medicine. The ACMG Foundation is a non-profit organization that works to attract and fund training for the next generation of medical geneticists and genetic counselors. The Foundation also sponsors important research, and promotes information about medical genetics.

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