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Patient Days for Rare Diseases

A rare disease might only affect a handful of people in Belgium, or it may affect hundreds. In either case, Takeda Belgium makes it a priority to listen and learn from these people’s daily experiences and needs.

Through conversations with rare disease patients it becomes clear that, for them and their families, there is a critical need to accelerate access to treatment and to raise awareness for the disease areas. There is also a clear need for peer-to-peer contact and empowerment. This can be achieved by, amongst other initiatives, receiving relevant evidence-based information regarding their daily lives with their disease.

In this perspective, Takeda Belgium supports rare disease patient days organised by hospitals.  These events aim to share correct and relevant information with patients, including information beyond the topic of medication, to facilitate peer-to-peer contact between patients and caregivers and promote different forms of interaction with the multidisciplinary medical staff. It goes without saying that these events also contribute to improving the general perception and awareness of rare diseases on the one hand, and aim to increase the patient’s voice and sense of empowerment on the other.

During the haemophilia patient day, UZ Leuven gave patients and their caregivers the opportunity to exchange experiences about daily life with a blood disorder. Additionally, a number of educational sessions were facilitated by the haemophilia staff. Topics such as insurance and pregnancy were tackled.

The HAE patient day in UZA and Saint-Luc gave patients, their relatives and caregivers the opportunity to dive into the specificities of the disease, how to optimise quality of life when living with the disease and possible treatments.