Subjects: FEA, FVT
Chiesi Global Rare Diseases Recognizes Rare Disease Day Highlighting Importance of Staying Connected for Information and Support
BOSTON, Feb. 26, 2021 /PRNewswire/ -- Chiesi Global Rare Diseases, a business unit of Chiesi Farmaceutici S.p.A., an international research-focused healthcare Group (Chiesi Group), is recognizing Rare Disease Day (RDD) 2021 and joins with the global community to support efforts to help patients and families affected by rare diseases to stay connected and access the support and information they need.
"At Chiesi, we are committed to letting the patient voice shape who we are and we continue to learn from patients every day of the year," said Giacomo Chiesi, Head of Chiesi Global Rare Diseases. "About half of patients living with a rare disease are unable to find a support group, and only about five percent have a treatment available. This is a true societal unmet need. Rare Disease Day 2021 is an opportunity to recognize the global patient and treatment communities for all the important work they do to inform our efforts to achieve the goal of health for all, at all ages."
To commemorate RDD 2021, Chiesi Global Rare Diseases launched the #wewearstripes social media campaign inviting participants to share photos and messages of support for people affected by rare diseases on their personal social media platforms. For each submission, Chiesi will make a 1? donation, up to 20.000?, to EURORDIS, the non-governmental patient-driven alliance representing 956 rare disease patient organizations in 73 countries and the founder and sponsor of RDD each year.
The #wewearstripes social media campaign is designed to raise awareness of many different rare diseases. Participants are encouraged to wear something with stripes, including clothes and accessories, and share a photo during the week of February 22-28, culminating with RDD on February 28th. The zebra is a symbol of rare diseases due to its black and white stripes that are central to its uniqueness. The #wewearstripes campaign kicked off with participation by retired tennis player Flavia Pennetta, professional basketball player Luigi Datome and former professional footballer Claudio Marchisio.
Chiesi Global Rare Diseases is currently focused on the development and commercialization of therapies to treat rare diseases in diverse areas including lysosomal storage disorders, rare hematologic and immunologic diseases, and ophthalmology disorders. In November 2020, Chiesi Group acquired an approved therapy for the treatment of adenosine deaminase severe combined immune deficiency (ADA-SCID), an ultra-rare inherited disorder that is estimated to occur in approximately one in 200,000 to 1,000,000 newborns worldwide.
"At the SCID Angels for Life Foundation, we join the effort to raise awareness for Rare Disease Day and remind everyone that for us, Rare Disease Day is every day," said Heather Smith, president and co-founder of the SCID Angels for Life Foundation.
In addition to supporting the #wewearstripes social media campaign, in commemoration of RDD, Chiesi Global Rare Diseases plans to light up its offices around the world including Italy, the United States, and Canada as an expression of support for people living with rare diseases.
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 www.chiesiglobalrarediseases.com.
About Chiesi Group
Based in Parma, Italy, Chiesi Farmaceutici is an international research-focused healthcare group with 85 years of experience in the pharmaceutical industry and a global presence in 29 countries. Chiesi researches, develops, and markets innovative drugs in the respiratory therapeutics, specialist medicine, and rare disease areas. Its R&D organization is headquartered in Parma (Italy), and is integrated with R&D groups in France, the USA, the UK, and Sweden to advance Chiesi's pre-clinical, clinical, and registration programs. Chiesi employs nearly 6,000 people.
Chiesi Group is a certified Benefit corporation. For more information, please visit www.chiesi.com.
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SOURCE Chiesi Global Rare Diseases
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