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The event on rare diseases was a big success

On Tuesday, 8 October 2026, the Institute of Materials Science of Barcelona (ICMAB, CSIC) hosted the event “De la recerca al pacient: nous camins en malalties minoritàries”, bringing together more than 50 participants including researchers, clinicians, patients, and patient association representatives


On Tuesday, 8 October 2026, ICMAB hosted the event “De la recerca al pacient: nous camins en malalties minoritàries”, an event to talk about rare disases that brought together reserachers in this topics, alongside with clinicians and patients. It was a huge success! This event was held as part of the European Innovation Council (EIC) Nano4Rare project, which focuses on developing nanomedicine-based therapies for Fabry disease. 

Connecting researchers and patients

The day started with a welcome by David Amabilino, ICMAB Director, and Nora Ventosa and Elisabet González, coordinators of the project Nano4Rare. After this, there was a full morning of talks from researchers, clinicians and patients as well. Some of the highlight talks were by Eddi Prades (UAB, IBB and CIBER-BBN), Marc Moltó (VHIR), Rafael Artuch (Hospital Sant Joan de Déu and CIBERER) and Laura López (Director Biotech Client Partner, IQVIA).
You can see the full programme here.
 

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During the morning session there were several different talks | ICMAB-CSIC

A look at research, innovation and patient experience

In the afternoon, it was the turn for two roundtables.

The first one, moderated by ICMAB's Guillem Vargas, was about patient experience and that of the patients relatives. It had the participation of Thaís Molina, Alfredo Romero, Laura Rico, secretary of JD Associació CTNNB1 and Beatriz García, representative of patients, secretary in Catalunya of the Associació Nacional de la Síndrome de Ehlers-Danlos (ANSEDH)and cofounder of Malalties Minoritàries Terrassa.

The second one, moderated by Enriques Vilalta, member of Nano4Rare and Delbios Pharmaceuticals S. L., counted with Nora Ventosa, CEO and cofounder of Delbios Pharmaceuticals S.L., Laura López, Director Biotech Client Partner, IQVIA Marc Martinell, CEO Minoryx Therapeutics S.L., Mariano Vazquez, CTO / CSO ELEM Biotech S.L. and Alfonso del Rey, head of the Knowledge Transfer Unit of ICMAB-CSIC.
 

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Roundtable about patients and patients relatives, moderated by Guillem Vargas | ICMAB-CSIC

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 and Elisabet González, researchers at the Nanomol-Bio group at ICMAB-CSIC, and is linked to the Phoenix OITB EU project (Pharmaceutical Open Innovation Test Bed for Enabling Nano-pharmaceutical Innovative Products). 

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The project is funded by the European Union’s Horizon Europe research and innovation program under grant agreement No. 101136772.


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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.

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Oriol
Oriol
16 October 2026
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