Today we celebrate Rare Disease Day and Fondazione Benzi is happy to support it also this year with the initiative “Share your voice: what it means to be rare”.
We are actively involved in research projects promoting scientific innovation and access to treatments for rare diseases. In this framework, fostering patients’ engagement is also crucial to ensure that their health needs become a priority, especially in decision-making processes.
There are 300 million people living with a rare disease worldwide. Their needs do not have to and cannot be ignored!
We would like to spotlight these needs in order to make sure that they are better identified and met. To this end, we collected contributions from patients with rare diseases related to their personal experience, including the challenges they have to face. In particular, relevant issues on Thalassaemia have been raised by a patient from Associazione Italiana Thalassemici – Sez. Prov. Bari, as well as on rare cancers thanks to a representative from the patients’ association Bottega del Sorriso. Moreover, a focus on the experience from a young patient with Thalassaemia, from the Young Persons Advisory Group KIDS Albania has been provided.
We are extremely glad that they accepted to share their voice, allowing us and other stakeholders to consider the possible actions to be implemented as starting point to address their needs.
A video including all these contributions has just been published on our website. Watch the video and spread the word!
Share your colours!