ROUNDTABLE

Jasjote Grewal introduced the collaboration partner Alastair Kent from the UK, via an online video conference who spoke about patient advocacy.

Alastair explained the importance of research focused on rare diseases, which affect not only the individual but which also have a much greater collective impact. The involvement of patients and their families from the beginning of the health research process is crucial as it can give researchers further insight to understand the disease and the context, in order to provide relevant treatment. Sometimes small improvements in physical condition can lead to great changes in quality of life, abilities and self-perception of patients, which also has a significant impact for their families and daily life.