{"id":132981,"date":"2026-03-04T12:20:12","date_gmt":"2026-03-04T11:20:12","guid":{"rendered":"https:\/\/ibecbarcelona.eu\/event\/thematic-network-net-rare-workshop-4-bridging-rare-diseases-scientific-research-and-clinical-needs\/"},"modified":"2026-03-24T10:38:07","modified_gmt":"2026-03-24T09:38:07","slug":"thematic-network-net-rare-workshop-4-bridging-rare-diseases-scientific-research-and-clinical-needs","status":"publish","type":"tribe_events","link":"https:\/\/ibecbarcelona.eu\/ca\/event\/thematic-network-net-rare-workshop-4-bridging-rare-diseases-scientific-research-and-clinical-needs\/","title":{"rendered":"Thematic Network. NET-RARE Workshop 4: Bridging Rare Diseases Scientific Research and Clinical Needs"},"content":{"rendered":"

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\u2019s 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.<\/p>\n

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.<\/p>\n

 <\/p>\n

Scheduled Program:\u00a0<\/strong><\/p>\n

9.30-9.40: Welcome and short introduction of the workshop<\/p>\n

9.40-10.00: Invited speaker:\u00a0Daniel Natera de Benito, Neuromuscular Unit of Hospital Sant Joan de D\u00e9u (Barcelona)<\/p>\n

10.00-10.20: Invited speaker: Nora Ventosa, Nora Ventosa, Co-founder and CEO of DELBIOS Pharmaceuticals SL and Co-founder and President of Nanomol Technologies SL.<\/span><\/p>\n

10.20-10.40:\u00a0Chiara Ninfali, IBEC group \u201cBiosensors for Bioengineering\u201d<\/p>\n

10.40-11.00: Invited speaker:\u00a0Maria\u00a0Cols Roig, from Pediatric Pulmonology Department and the Cystic Fibrosis Unit, Sant Joan de D\u00e9u Hospital<\/p>\n

11.00-11.20: Invited speaker:\u00a0Marisol Montolio dell\u2019Olmo, Scientific director of Duchenne Parent Project Spain Association<\/p>\n

11.20-12.00: Coffee Break and Networking<\/p>\n

12.00-13.00:\u00a0Round Table<\/p>\n

13.00-13.10:\u00a0Remarks and Closing<\/p>\n

 <\/p>\n

To register click here<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

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 … Read more<\/a><\/p>\n","protected":false},"author":54,"featured_media":0,"template":"","meta":{"_tribe_events_status":"","_tribe_events_status_reason":"","footnotes":""},"tags":[],"tribe_events_cat":[],"class_list":["post-132981","tribe_events","type-tribe_events","status-publish","hentry"],"yoast_head":"\nThematic Network. 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