On the occasion of Rare Disease Day 2026, Fondazione Benzi is promoting a series of videos featuring members of its Scientific Committee and distinguished international experts, focusing on key issues in research, therapies and access to medicines.

The series opens with Prof Carsten Werner Lederer, Head of Blood Disorder Genetics and Thalassemia Department at The Cyprus Institute of Neurology & Genetics, who explores how advanced technologies are transforming basic research, from which new therapeutic options for rare diseases emerge.

He is followed by Prof Adriana Ceci, Past President of Fondazione Benzi, who focuses on progress in treatments for children living with a rare disease and the importance of ensuring appropriate care from the earliest stages of life.

Issues of rights and equity are addressed by François Houyez, Director of Treatment Information and Access at EURORDIS, who reflects on existing disparities in access to therapies across countries.

Enrico Bosone, President of SIARV (Società Italiana Attività Regolatorie, Accesso, Farmacovigilanza), highlights the commitment of European industry to the development of medicines for rare diseases and the importance of public–private collaboration.

The series concludes with our researcher Maria Luisa Dalessandro, who looks at the future of research, emphasising the need for supporting young scientists and for advancing research in rare diseases strengthening international collaboration and the interest in new technologies.

A shared commitment to advancing scientific innovation and ensuring the right to care for all people living with a rare disease.