Chiesi Global Rare Diseases Recognizes Rare Disease Day and Highlights Plans to Expand Focus on Patient Advocacy in 2020
- Chiesi Group recently announced launch of new Chiesi Global Rare Diseases division to address significant unmet needs in rare diseases
- Division to advance research and build partnership opportunities with global leaders in patient education and support
BOSTON, Feb. 27, 2020 /PRNewswire/ -- Chiesi Global Rare Diseases, a business unit of Chiesi Farmaceutici S.p.A. focused on research and development of treatments for rare and ultra-rare disorders, today announced its support for Rare Disease Day 2020 and highlighted the company's continued commitment to understanding and addressing the needs of patients living with rare diseases around the world. Chiesi Global Rare Diseases was established in February 2020 to target new treatments for rare diseases, with a priority focus on developing therapies for lysosomal storage disorders and rare hematology and ophthalmology disorders.
"Following the launch of our new rare disease business unit, we were honored to meet with many members of the lysosomal storage disease community at the recent WORLDSymposium meeting in Orlando," said Giacomo Chiesi, Head of Chiesi Global Rare Diseases. "The insights we gain from the advocacy community are invaluable and play a key role in helping our team advance important new clinical research and development programs. Our meetings during the WORLDSymposium reflect our broader plans for engagement with many leaders of rare disease communities in the months ahead."
In 2020, members of the leadership team at Chiesi Global Rare Diseases will meet with leaders from advocacy organizations as well as individual families affected by rare diseases during a global "listening tour." The insights from these meetings will help the team at Chiesi Global Rare Diseases gain a better understanding of the challenges and needs of families affected by rare diseases and will drive the company's efforts to be an effective partner for the rare disease communities that will be its focus in research and product development in the years ahead.
"Our discussions with advocates during the WORLDSymposium demonstrated how important it is to build closer relationships between patients and industry to make sure that our support is aligned with their needs," said Mr. Chiesi. "We look forward to meeting and hearing from many members of the advocacy community this year and to advancing our goal to partner with them to make a difference for patients all around the world."
Rare Disease Day is held each year on the last day of February and was established by EURORDIS in 2008 as an opportunity for patient organizations and advocacy groups to build broader awareness of rare diseases and the daily struggles patients, caregivers and families face. This year's theme for Rare Disease Day is "Reframe Rare," encouraging everyone to take steps to clarify many of the misconceptions that can make people with rare diseases feel isolated and affect the quality of care and support they receive.
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.
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.
Media Contacts:
Valentina Biagini
Senior Group Communication Manager, Chiesi Group
Phone – +39 348 7693 623
Email – [email protected]
Jenna Urban
Berry & Company Public Relations
Phone – 1 212 253 8881
Email – [email protected]
SOURCE Chiesi Global Rare Diseases
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