ISABIAL hosts the World Rare Diseases Day Conference promoted by AITER and FEDER
The meeting will bring together this Thursday scientists from the Alicante Institute for Health and Biomedical Research, FISABIO, La Fe Health Research Institute, Fundación Jiménez Díaz Health Research Institute, CIBERER, UMH, UA, UV, UPV, CIEMAT, the Institute of Neurosciences and the Príncipe Felipe Research Center
The event, aimed at patients, families, healthcare professionals and research staff, will take place at Dr. Balmis Hospital
Alicante (01.03.23). The Alicante Institute for Health and Biomedical Research (ISABIAL) is organizing this Thursday, March 2, the World Rare Diseases Day Conference promoted by the Alliance for Translational Research in Rare Diseases of the Valencian Community (AITER) and the Spanish Federation of Rare Diseases (FEDER). The event, aimed at patients, families, healthcare professionals and research staff, will take place in the auditorium of Dr. Balmis Hospital between 10:30 am and 1:30 pm.
Rare diseases, also known as low‑prevalence or minority diseases, are potentially life‑threatening conditions or conditions that cause chronic disability, with a prevalence in the European Union of fewer than 5 cases per 100,000 inhabitants. Currently, between 6,000 and 7,000 rare diseases have been identified, and it is estimated that these conditions collectively affect between 6% and 8% of the population. In Spain, they affect around 3 million people, and between 27 and 36 million people across the European Union.
The Rare Diseases Information System (SIER‑CV) of the Valencian Community has recorded 8,667 cases, of which 52.6% are women (4,558) and 47.4% men (4,109). By provinces, Valencia has the highest number of cases with 4,443 (51.3%), followed by Alicante with 3,322 cases (38.3%) and Castellón with 902 cases (10.4%).
Dr. Rosario Sánchez, head of the Rare Diseases research group at ISABIAL and of the Multidisciplinary Unit for Low‑Prevalence Diseases at Dr. Balmis Hospital in Alicante, highlighted the work carried out by this Internal Medicine unit in Alicante, where, since its creation in 2008 as a pioneering unit, 9,000 consultations have been provided.
At the conference to be held on Thursday, among others, researchers from ISABIAL will attend, as well as the Foundation for the Promotion of Health and Biomedical Research of the Valencian Community (FISABIO), the Príncipe Felipe Research Center (CIPF) of Valencia, the Biomedical Research Networking Center for Rare Diseases (CIBERER), the Jiménez Díaz Foundation Health Research Institute (IIS‑FJD), the Center for Energy Environmental and Technological Research (CIEMAT), the Polytechnic University of Valencia (UPV), the University of Valencia (UV), the La Fe Health Research Institute (IIS La Fe), Miguel Hernández University of Elche (UMH), the University of Alicante (UA), and the Institute of Neurosciences CSIC‑UMH.
The meeting will also include representatives from the Alliance for Translational Research in Rare Diseases of the Valencian Community (AITER), the Spanish Federation of Rare Diseases (FEDER), and the Regional Ministry of Health and Public Health. In this regard, the closing session will be led by the Regional Secretariat for Health Efficiency and Healthcare Technology, Concha Andrés.
The conference will be opened by the Director Manager of the Alicante Health Department–General Hospital, Miguel Ángel García, and the Scientific Director of ISABIAL, Cristina Alenda. The event will begin with a research and innovation panel, followed by oral presentations by young researchers, and will conclude with a roundtable discussion with patients entitled “Clinical Practice, Diagnosis and Treatment”.
Exhibition
In addition, around thirty posters with research studies by researchers will be displayed on a digital screen in the Lucernario of the health center, where the photographic exhibition “Rare Diseases: Cutting‑Edge Research”, provided by the Príncipe Felipe Research Center (CIPF) of Valencia, has been installed and can be visited during this week.
This exhibition consists of a selection of photographs on rare disease research carried out by researchers from the Biomedical Research Networking Center (CIBERER). All of them were submitted to the two editions of the Photography Contest on Rare Disease Research, in 2021 and 2022.
