Disease education program aims to help patients, caregivers and families affected by Fabry disease to make informed healthcare decisions
Program includes new resources for healthcare professionals to support strategies in diagnosis and disease management
BOSTON, Oct. 13, 2020 (GLOBE NEWSWIRE) -- Chiesi Global Rare Diseases, a business unit of Chiesi Farmaceutici S.p.A., an international research-focused healthcare Group (Chiesi Group), today announced the launch of Rethink Fabry, a disease education program to bring information and perspectives about health to patients, caregivers and families affected by Fabry disease as well as healthcare professionals.
“As with any rare disease, working to build broader awareness of Fabry disease and providing patients, caregivers and healthcare providers with the information they need to make informed decisions is an important and ongoing need. Chiesi Global Rare Diseases is deeply committed to working with all members of the Fabry community to achieve this goal,” said Giacomo Chiesi, Head of Chiesi Global Rare Diseases. “The patients are the beginning and end of our journey and our Rethink Fabry campaign will provide them with many new resources and insights to help them make the optimal decisions about their health.”
Fabry disease is a progressive, inherited, multisystemic lysosomal storage disorder (LSD) caused by deficient activity of the lysosomal alpha-Galactosidase A (GLA) enzyme, resulting in abnormal buildup of a fatty substance called globotriaosylceramide (Gb3) in blood vessel walls throughout the body. Early signs of the disease often appear in childhood and adolescence. It affects many organs, including the heart, kidney and nervous system, resulting in life-threatening complications and a reduced life expectancy. Fabry disease occurs in one in every 40,000 to 60,000 people worldwide.
The Rethink Fabry program is designed to help build broader awareness of Fabry disease including symptoms and the significant impact it has on the daily lives of patients and families. It also aims to highlight the continuing areas of unmet medical need in patient care and strategies to shorten time to diagnosis.
About Fabry Disease
Fabry disease is an X-linked inherited disease that results from deficient activity of the lysosomal α–Galactosidase–A enzyme resulting in progressive accumulation of abnormal deposits of a fatty substance called globotriaosylceramide (Gb3) in blood vessel walls throughout a person's body. Fabry disease occurs in one person per 40,000 to 60,000. Fabry patients inherit a deficiency of the α–Galactosidase–A enzyme, which is normally responsible for the breakdown of Gb3. The abnormal storage of Gb3 increases with time and, accordingly, Gb3 accumulates, primarily in the blood and in the blood vessel walls. The ultimate consequences of Gb3 deposition range from episodes of pain and impaired peripheral sensation to end-organ failure – particularly of the kidneys, but also of the heart and the cerebrovascular system. For more information visit https://rethinkfabry.com/.
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 www.chiesi.com.
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