Thematic Network. NET-RARE Workshop 4: Bridging Rare Diseases Scientific Research and Clinical Needs
This fourth workshop aims to bring together representatives from medical hospitals, pharma and spin-off companies, patient associations, and research groups to create an interactive panel discussion on rare diseases from multiple perspectives. Following brief presentations introducing each participant’s research area and expertise, a round-table discussion will take place after the coffee break to explore key challenges in communication and collaboration across disciplines.
The session will focus on how scientific research can more effectively address clinical needs, and how clinicians can help guide and strengthen research directions. With contributions from patient associations and pharma/spin-off representatives, the discussion will also highlight the development of effective therapies and the patient perspective, emphasizing the importance of strong cross-sector collaboration in the rare disease landscape.
Scheduled Program:
9.30-9.40: Welcome and short introduction of the workshop
9.40-10.00: Invited speaker: Daniel Natera de Benito, Neuromuscular Unit of Hospital Sant Joan de Déu (Barcelona)
10.00-10.20: Invited speaker: Nora Ventosa, CEO and co-founder of Nanomol Technologies S.L and DELBIOS Pharmaceuticals SL spin-off of CSIC.
10.20-10.40: Chiara Ninfali, IBEC group “Biosensors for Bioengineering”
10.40-11.00: Invited speaker: Maria Cols Roig, from Pediatric Pulmonology Department and the Cystic Fibrosis Unit, Sant Joan de Déu Hospital
11.00-11.20: Invited speaker: Marisol Montolio dell’Olmo, Scientific director of Duchenne Parent Project Spain Association
11.20-12.00: Coffee Break and Networking
12.00-13.00: Round Table
13.00-13.10: Remarks and Closing
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