A meeting point for science and patients
Fabry disease is a rare condition that significantly impacts patients' lives. This event, organized as part of Fabry Disease Awareness Month, which is April, and within the framework of the European EIC Nano4Rare project, will feature expert talks, research project presentations, and patient testimonials. Attendees will also have the opportunity to engage in networking activities, including an exhibition space for patient associations to showcase their initiatives.
We are pleased to announce this event today, February 28, on Rare Disease Day, highlighting our commitment to advancing research and awareness for Fabry disease and other rare conditions.
Event Highlights
The program includes:
- Opening by David Amabilino (ICMAB-CSIC director) and Nora Ventosa (Nano4Rare coordinator).
- Keynote Lectures: "Fabry Disease: Past, Present, and Future" by Guillem Pintos (Pediatric Nephrologist, Vall d'Hebron Hospital, Barcelona) and "Future for Fabry patients" by Maria Camprodon (Rare and Metabolic Diseases Unit, Vall d'Hebron Hospital), among others.
- Research project presentations: Introduction to the Nano4Rare project by Elisabet Gonzàlez (ICMAB-CSIC) and other ongoing research projects.
- Patient associations panel: Featuring representatives from MPS Lisosomales, FEDER, and the Catalan Federation of Rare Diseases.
- Roundtable discussions: Topics include the importance of early diagnosis, the challenges of R&D in lysosomal storage disorders and the importance of cooperative networks.
- Networking Coffee Break and Lunch: An opportunity to connect with researchers, healthcare professionals, and patient organizations.
- Lab Visit: A guided tour of ICMAB’s laboratory specialized in nanopharmaceutical research for Fabry disease.
Take a look at the complete program here. The event will be held in Catalan/Spanish.
Registration and participation
The event is open to researchers, healthcare professionals, patients, family members, association representatives, and industry professionals. Registration is free and open until April 11, 2025. Attendees can indicate dietary requirements, and interest in lab visits during registration. Register here.
Join us in advancing Fabry disease research and fostering connections within the scientific and patient communities. Don’t miss this opportunity to contribute to the future of rare disease treatment!
Details
The event will take place on Tuesday, 29 April 2025, from 9:30 AM to 4:30 PM at the Sala d'Actes Carles Miravitlles at the Institute of Materials Science of Barcelona (ICMAB, CSIC), at the UAB Campus in Bellaterra (Barcelona). Attendance is free of charge but registration is required.
About Nano4Rare
Nano4Rare is a European research project focused on the preclinical development of a nanomedicine candidate for Fabry disease treatment, aiming for clinical application. Nano4Rare is a European Innovation Council (EIC) Transition project, a program aimed for the validation of technologies and the development of business plans for specific applications (TRL 3-6). The project is coordinated by Nora Ventosa, researcher at the Nanomol-Bio group at ICMAB-CSIC.
The project is funded by the European Union’s Horizon Europe research and innovation program under grant agreement No. 101136772.
Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or the European Research Executive Agency. Neither the European Union nor the European Research Executive Agency can be held responsible for them.
