Chiesi Global Rare Diseases has launched a campaign called “Rethink Fabry” that seeks to help people with the rare genetic disorder, along with their caregivers and family members, to make informed healthcare decisions.
The Italian pharmaceutical’s “disease education program,” currently intended for U.S. residents only, also includes new resources for healthcare professionals to support the diagnosis and management of Fabry disease.
“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,” Giacomo Chiesi, head of Chiesi Global, said in a press release.
“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 optimal decisions about their health,” Chiesi said.
The campaign aims to call broader attention to Fabry and its symptoms, as well as the impact the disease has on the everyday lives of patients and their families. With its new website, the program also emphasizes areas of unmet need in patient care and the time it takes individuals with the disease to get a diagnosis.
In its section on “The Hidden Impact of Fabry Disease,” this patient webpage points out that some daily symptoms, including pain and gastrointestinal issues, can affect daily life, even when the disease is thought to be under control.
Long-term disease challenges also are addressed, particularly Fabry’s impact, despite treatment, on the kidneys, heart, and brain.
The website also offers a free webinar series, featuring patients and Fabry experts, that will provide information and guidance to those with the disease. Registration in these webinars, which are intended only for those living in the U.S., may be completed here.
Chiese Global’s program also explores the benefits that can come with a greater awareness of the challenges faced by people living with Fabry, potentially including more proactive, informed, and advanced care.
Finally, the campaign offers a downloadable resource to help facilitate conversations between patients and their healthcare team. The guide can help patients understand the risks of disease progression, establish their healthcare team, and learn how to better manage Fabry.
The program’s additional webpage for healthcare professionals discusses unmet needs in Fabry, as well as treatments, disease management, and diagnosis. It also has information about lesser-known symptoms among treated patients, including kidney function decline and neurological issues.
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