Description
Rare diseases are a diverse group of disorders with low prevalence, but if we combined all patients, they would form the world’s 3rd largest population. These diseases pose significant challenges for patients and healthcare providers due to their chronic, debilitating nature and limited prevalence, resulting in restricted sample availability and genetic variability. Many rare diseases lack established diagnostic methods or treatment guidelines, and existing therapies often only alleviate symptoms rather than cure the conditions.
To address these issues, the Rare Disease Thematic Network promotes collaboration among IBEC groups, facilitating the sharing of advanced technologies, bioengineered models, and analytical techniques. The Network aims to streamline research and minimize variability. Additionally, through a concluding roundtable with medical experts, it seeks to bridge clinical needs and scientific methods, fostering interdisciplinary collaboration and advancing our understanding of rare disorders, ultimately leading to more effective treatments. This integrated approach is essential for improving research quality and developing effective treatments for rare disease patients
NET-RARE counts on the participation of the following IBEC research groups:
- Bacterial Infections: Antimicrobial Therapies
- Biosensors for Bioengineering
- Nanoprobes & Nanoswitches
- Nanobioengineering
- Molecular and Cellular Neurobiotechlogy
- Molecular Imaging for Precision Medicine
Contact us:
Chiara Ninfali: cninfali@ibecbarcelona.eu
Network Members
The six IBEC groups in the Rare Disease Network use methods from basic to translational research, including 3D models, organ-on-chip technologies and biomarker biosensors, to study disease complexity and foster collaboration.
Network Coordinator:
Chiara Ninfali
Postdoctoral Researcher
She is actively involved in developing 3D co-culture muscle models for the study of different rare muscle diseases.
Network Representatives:
Marina I. Giannotti
Senior Researcher
She works on finding mechanical biomarkers and treatments for lysosomal and collagen VI disorders.
Aránzazu Villasante Bermejo
Arantzazu Villasante works on bioengineered models for rare cancers.
Pol Picón Pagès
Postdoctoral researcher
He works on rare neurodegenerative diseases
Eduard Torrents Serra
Senior Group Leader
He works at finding new strategies to treat bacterial chronic infections in cystic fibrosis patients
Network Programme
NET-RARE will organize 3 half-day workshops (WS) and one in-person roundtable, each focusing on key topics in rare disease research. Each workshop will feature a one-hour seminar led by a distinguished national or international expert, followed by 30-minute presentations from two IBEC group speakers and one local expert from outside IBEC, broadening perspectives on the theme.
A final retreat will be held to synthesize the main concepts of the workshops, discuss the main challenges and conclusions emerged from the round table and prepare for future collaborative “proof of concept” projects.
Workshops information
All IBEC groups are welcome to join the network and actively participate by sharing their insights.