Chiesi Global Rare Diseases Announces Results from Study Evaluating Economic Burden of Rare Diseases and Launches Second Annual #WeWearStripes Campaign on Rare Disease Day

BOSTON, Feb. 28, 2022 /PRNewswire/ -- Chiesi Global Rare Diseases, a business unit of Chiesi Farmaceutici S.p.A., an international research-focused healthcare Group (Chiesi Group), today announced the release of a white paper titled, "The Burden of Rare Diseases: An Economic Evaluation," based on results from a study conducted with support from IQVIA, a leading global provider of advanced analytics, technology solutions, and clinical research services to the life sciences industry. The company is also recognizing Rare Disease Day 2022 with the launch of the second annual #WeWearStripes for the Rare Ones social media campaign.  

"Every year Rare Disease Day brings together more than 300 million people affected by rare diseases around the world in a collective effort to build broader awareness and call for new treatment options," said Giacomo Chiesi, head of Chiesi Global Rare Diseases and co-author of the study. "At Chiesi, we are focused on helping people better understand the cost drivers and economic impact that a lack of available treatments poses for people living with rare diseases, and the new white paper we are releasing today provides a critical benchmark that highlights the unmet needs of the community. Further engagement on these issues is fundamental, which is why we are also proud to launch the second edition of our #WeWearStripes campaign inspired by a symbol of rare diseases, the zebra."

Chiesi Global Rare Diseases and IQVIA set out to study the direct, indirect, and mortality-related costs for a sample of rare diseases across five therapeutic areas to evaluate the burden of care when treatment is available versus when no treatment exists, and to compare these costs to common mass market diseases. Results demonstrated that rare diseases impose a substantial economic burden that can be reduced with availability of new treatments.

The study found that the burden of rare diseases is approximately 10 times higher than mass market diseases on a per patient per year (PPPY) basis, and a lack of treatment for a rare disease is associated with a 21.2 percent increase in total costs PPPY. The cost for the 8.4 million people in the U.S. who are impacted by 373 rare diseases considered in the analysis is estimated to be $2.2 trillion per year. The white paper is available for download at https://chiesirarediseases.com/assets/pdf/chiesiglobalrarediseases.whitepaper-feb.-2022_production-proof.pdf.

"Empirical studies need to consider many aspects of healthcare costs to get a full picture of the overall burden of rare diseases. Based on the estimates from our study, the societal responsibility for all known rare diseases may be in the range of $7.2 trillion to $8.6 trillion per year," said Gina Cioffi, senior manager of public affairs for Chiesi Global Rare Diseases and co-author of the study. "The results of this study are clear - access to therapies for people living with rare diseases generates significant value for society. Investment in development of new therapies as well as broader diagnostic tools and newborn screening is justified."

For the second annual #WeWearStripes campaign, Chiesi Global Rare Diseases is calling for participants to visit https://wewearstripes.com/ to apply a special striped zebra filter to a personal photo and share the image on social media in recognition of Rare Disease Day. For each photo posted, Chiesi Global Rare Diseases has pledged a donation to Make-A-Wish Foundation^® International. Photos from the campaign will also be used to create a mosaic forming the image of a zebra, whose unique pattern of stripes are often used as a symbol of the unique set of symptoms experienced by each person living with a rare disease.

The #WeWearStripes campaign kicked off with participation by ambassador athletes including American paralympic swimmer Jessica Long, Ukrainian tennis player Elina Svitolina, Italian paralympic triathlete Veronica Yoko Plebani, and Italian basketball player Luigi Datome.

About Chiesi Global Rare Diseases

Chiesi Global Rare Diseases is a business unit of the Chiesi Group established in February 2020 and focused on research and development of treatments for rare and ultra-rare disorders. The Global Rare Diseases unit works in collaboration with Chiesi Group to harness the full resources and capabilities of our global network to bring innovative new treatment options to people living with rare diseases, many of whom have limited or no treatments available. The unit is also a dedicated partner with global leaders in patient advocacy, research and patient care. For more information visit https://chiesirarediseases.com/.

About Chiesi Group

Based in Parma, Italy, Chiesi is an international research-focused pharmaceuticals and healthcare group with over 85 years' experience, operating in 30 countries with more than 6,000 employees (Chiesi Group). To achieve its mission of improving people's quality of life by acting responsibly towards society and the environment, the Group researches, develops and markets innovative therapeutic solutions in its three focus areas: AIR (products and services that promote respiration, from new-born to adult populations), RARE (treatment for patients with rare and ultra-rare diseases) and CARE (products and services that support specialty care and consumer-facing self-care). The Group's Research and Development centre is based in Parma and works alongside 6 other important research and development hubs in France, the U.S., Canada, China, the UK, and Sweden to pursue its pre-clinical, clinical, and regulatory programmes. In 2018 Chiesi has changed its legal status to a Benefit Corporation, according to the law in Italy, USA and, more recently, in France, by incorporating common benefit objectives into its bylaws, to generate value for its business, for the society and the environment. Since 2019, Chiesi has been the world's largest B Corp certified pharmaceutical group. B Corps are global leaders convinced to leverage business as a force for good. Moreover, as a Benefit Corporation, Chiesi Farmaceutici S.p.A. is required by law to report annually in a transparent way about its progress in achieving the common benefits objectives it has set forward. The Group is committed to becoming carbon neutral by the end of 2035.

For more information, please visit www.chiesi.com.

Chiesi Global Rare Diseases Media Contact
Jenna Urban
Berry & Company Public Relations
+1-212-253-8881
[email protected] 

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SOURCE Chiesi Global Rare Diseases