- Diagnosis is one of the most important issues affecting health, longevity and well-being for rare disease patients and their families
- More than 40 Shire events held around the world will provide important stakeholder feedback to new Global Commission formed by Shire, Microsoft and EURORDIS
- Shire continues Rare Count social media campaign to personalize impact of rare diseases, which afflict one in every 20 people
Cambridge, MA – February 22, 2018 – Shire plc (LSE: SHP, NASDAQ: SHPG), the global biotechnology leader in rare diseases, announces its continuing global education and awareness efforts on Rare Disease Day 2018, to deliver on its commitment to champion those impacted by rare disease, including patients, families and caregivers. The company is helping to raise awareness about the impact and prevalence of rare diseases, while also listening to and working with an extended community of stakeholders on potential innovative solutions to help reduce the time to diagnosis.
“As the global leader in rare diseases, we, at Shire, uniquely understand the challenging journey rare disease patients and their families face every day,” said Flemming Ornskov, M.D., M.P.H., Chief Executive Officer. “We decided to focus this year’s Rare Disease Day efforts on diagnosis because an accurate and timely diagnosis can be the key to a longer, healthier life – especially for a child with a rare disease.”1
Shire’s role on the newly established Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease was announced earlier this week. Shire, Microsoft and EURORDIS-Rare Diseases Europe are teaming up to address the multi-year diagnosis challenge many patients experience by working to break down barriers to diagnosis. The Global Commission partners with experts from multiple sectors, including patient advocacy groups, academic/research institutions, hospital and health systems, policy organizations, technology and biotechnology companies, to develop a much-needed roadmap to help guide the rare disease field in accelerating time to diagnosis. Co-chaired by Dr. Ornskov, the Global Commission expects to publish its findings in early 2019.
To extend the reach of the Global Commission’s mission, Shire is helping drive the conversation around ways to reduce the time to diagnosis through work and partnership at more than 40 events and activities around the world on Rare Disease Day. The discussion and insights shared during these events will be provided to the Global Commission’s work and information bank, offering valuable contributions from stakeholders who represent the rare disease community.
Diagnosis is one of the most important issues affecting health, longevity and well-being for rare disease patients and their families. Forty percent of people are misdiagnosed at least once, with some patients waiting five to seven years to receive a correct diagnosis, often visiting eight physicians – four primary care physicians and four specialists.1,2
Shire continues Rare Count social media campaign to raise awareness
The journey to a rare disease diagnosis can be emotionally, physically and financially challenging, with the lives of patients and their families/caregivers significantly impacted.3 It is estimated that 350 million people worldwide – or one in every 20 people – are living with a rare disease.4 To capture the real magnitude of rare disease and help people better understand how rare diseases can impact us, Shire launched Rare Count, which uses social media platforms and this “one in 20” statistic to calculate how many people in an individual’s social network may be living with a rare disease. To help raise awareness about rare disease, visit www.shire.com/RareCount to calculate and then share your Rare Count.
About Rare Diseases
Although each rare disease affects a relatively small number of patients, together they are one of the largest under-served patient populations in the world. Approximately 7,000 rare diseases have been identified, affecting 350 million people worldwide.4,5 In fact, if everyone with a rare disease lived in one country, it would be the world's third most populous country. Rare diseases also have a significant impact on children, with approximately 50 percent of all rare disease cases affecting children.6 A major challenge in the fight against rare disease is the journey to diagnosis, which can be emotionally, physically and financially challenging for patients as well as their families and caregivers.3
About Rare Disease Day
Rare Disease Day is an annual awareness day dedicated to educating the public about rare diseases and their associated challenges. It takes place every year on the last day of February (February 28 or February 29 in a leap year—the rarest date on the calendar) to underscore the nature of rare diseases and what patients face. Rare Disease Day was established in Europe in 2008 by EURORDIS-Rare Diseases Europe, the organization representing rare disease patients in Europe, and is now observed in more than 90 nations. Rare Disease Day is sponsored in the U.S. by the National Organization for Rare Disorders (NORD)®.
For more information about Rare Disease Day in the U.S., go to www.rarediseaseday.us. For information about global activities for Rare Disease Day, go to www.rarediseaseday.org.
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NOTES TO EDITORS
Shire is the global leader in serving patients with rare diseases. We strive to develop best-in-class therapies across a core of rare disease areas including hematology, immunology, genetic diseases, neuroscience, and internal medicine with growing therapeutic areas in ophthalmics and oncology. Our diversified capabilities enable us to reach patients in more than 100 countries who are struggling to live their lives to the fullest.
We feel a strong sense of urgency to address unmet medical needs and work tirelessly to improve people’s lives with medicines that have a meaningful impact on patients and all who support them on their journey.
1 Shire. Supporting Our Patients. Available at: https://www.shire.com/-/media/shire/shireglobal/shirecom/pdffiles/responsibility%20report/shire-supporting-our-patients.pdf. Accessed December 6, 2017.
2 Kole A., Faurisson F. (2010) Rare Diseases Social Epidemiology: Analysis of Inequalities. In: Posada de la Paz M., Groft S. (eds) Rare Diseases Epidemiology. Advances in Experimental Medicine and Biology, Vol. 686. Springer, Dordrecht.
3 Institute of Medicine (US) Committee on Accelerating Rare Diseases Research and Orphan Product Development; Field MJ, Boat TF, editors. Washington (DC): National Academies Press (US); 2010. Available at: https://www.ncbi.nlm.nih.gov/books/NBK56184/. Accessed December 6, 2017.
4 Posada M, Taruscio D, Groft, S. Rare Diseases Epidemiology: Update and Overview. 2nd Edition. 2017. Vol. 1031. Springer. DOI: 10.1007/978-3-319-67144-4.
5 Engel PA, Bagal S, Broback M, Boice N. Physician and Patient Perceptions Regarding Physician Training in Rare Diseases: The Need for Stronger Educational Initiatives for Physicians. J Rare Disorders. Available at: http://www.journalofraredisorders.com/pub/IssuePDFs/Engel.pdf. Accessed January 19, 2018.
6 Ionita C. Drug Development in Rare Diseases Presents Many Unique Challenges. Rare Disease Report. Available at: http://www.raredr.com/news/drug-development-challenges. Accessed January 19, 2018.