Chiesi Global Rare Diseases Recognizes Rare Disease Day Highlighting Importance of Staying Connected for Information and Support
Company sponsors #wewearstripes social media campaign calling on participants to share photos to express support for people affected by rare diseases Company to light up offices around the world including Italy, the United States, and Canada
BOSTON, Mass. - February 26, 2021 - 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.