XPatient 2025 Satellite Session – The Patient Experience in addressing minority diseases

Patients and their families play a key role in hospital transformation models. For this reason, knowing their needs is essential to generate an optimal care model.

This year, the day focused on patient experience focuses on addressing minority diseases.

Program

11:00 a.m. – 11:10 a.m.: Welcome at the Satellite XPatient Barcelona Congress 2025.

• Ms. Ana Martí Delgado; Director of Strategy and Quality of Parc Taulí
• Mr. Víctor Vergés; Head of the Patient Experience and Citizen Participation Unit

11:10 a.m. – 11:25 a.m.: Introduction to Rare Diseases, Clinical Expertise Units (UEC) and the challenges of the system.

• Dr. Víctor Manuel Martínez; Director of the Genomic Medicine Center at Parc Taulí

11:25 a.m. – 11:45 a.m.: Where are we? Explanation of the liaison office and success stories.

• Mr. Joan Pons; manager of the Parc Taulí Minority Disease Program

11:45 a.m. – 12:00 a.m.: Improving XPA in Minorities. Project to validate and see if it is possible to improve the current system with the participation of patients.

• Mr. Marcos Seneca Garcia; technician of the XPA Unit of the Parc Taulí

12:00 a.m. – 12:30 a.m.: Discussion with Patients (or relatives); what we like about current attendance and what we would like for tomorrow.

• Dr. Josefa Rivera, Director of Teaching at Parc Taulí, presents how Parc Taulí has ​​progressed in caring for patients with rare diseases and moderates the debate.

You can follow the session live. here.