Meeting on a comprehensive approach to rare diseases
The event, organised by BIOEF on 8 May at the BAT Tower, brought together around 80 healthcare professionals and representatives of patient organisations.
On 8 May, the BAT Tower in Bilbao hosted the conference “Comprehensive Approach to Rare Diseases”, organised by BIOEF with the support of Roche Farma, Sanofi, Ipsen and Boehringer Ingelheim, which brought together around 80 professionals from the healthcare, research and institutional sectors, as well as representatives from patient associations.
This event, chaired and moderated by Lorea Mendoza, scientific coordinator at BIOEF, aimed to share knowledge and reflect collectively on the strategy, progress and main challenges in the care and research of rare diseases, with a particular focus on improving diagnosis, treatments and the quality of life of those affected.
Forum for dialogue and reflection
The institutional welcome was given by Miren Lorea Bilbao, Director General of Osakidetza. The programme included two round-table discussions: one focusing on Strategies and Advances in Rare Diseases and the other on Research and Innovation in Rare Diseases.
Likewise, the first panel was moderated by Ane Fullaondo, Scientific Director of Biosistemak, and featured Beatriz Castillo, from the Neurology Department at Basurto University Hospital (OSI Bilbao-Basurto); Leticia Ceberio, from the Internal Medicine Department at Cruces University Hospital (OSI Ezkerraldea Enkarterri Cruces); Idoya Serrano, from the General Directorate of Osakidetza and ambassador for the Euskadi-UNICAS Project, and Olaia Martin, director and psychologist at ASEBIER.
The second round-table discussion was moderated by Iñaki Gutiérrez Ibarluzea, Director of Health Research, Innovation and Evaluation at the Basque Government’s Department of Health, and brought together Eva Bermejo, Scientific Director of the Institute for Research into Rare Diseases (IIER) and researcher at the Carlos III Health Institute, Javier de las Heras, from the Congenital Disorders Unit at Cruces University Hospital-OSI Ezkerraldea-Enkarterri-Cruces; Cristina Irigoyen, from the Ophthalmology Department at Donostia University Hospital-OSI Donostialdea; and Juana María Saénz, founder of ASEBIER.
The event also featured the participation of leading professionals from the clinical, research and voluntary sectors, as well as the presentation of the Comprehensive Plan for Rare Diseases in Castile and León (PIERCYL), led by María Isidoro, the plan’s scientific director.
Participatory workshop facilitated by Biosistemak
As part of the meeting, a participatory workshop was held to identify needs and objectives for moving towards a comprehensive approach to rare diseases in the Basque Country. The workshop was facilitated by the director of our Institute’s and Yhasmine Hamu, a researcher and project manager.
This collaborative working space enabled the collection of contributions from different areas of the healthcare and research sectors, aimed at identifying shared challenges and possible future courses of action.
