Share4Rare has very nice support for patient profiles with a diagnosis. They will find that Share4Rare is a system in which they can interact, communicate, and share knowledge with other users sharing the same diagnosis. It will also bridge the user to the most relevant patient organizations according to its disease.  There is however the case of undiagnosed rare disease patients. These patients form distinct populations, with specific needs, but also similar experiences and worries to those of the diagnosed patients. However the provision of resources, the access to and availability of information and the means for sharing experiences and questions for this collective are absent or, at most, scarce.  The question for Share4Rare is whether the platform could benefit the undiagnosed populations by exploiting its AI-based design. This design aims to foster the knowledge on rare diseases through collaborative intelligence built on equity principles. The more information the user shares with the community, the more information the platform can provide in return, under strict confidentiality, privacy, and ethical guarantees. https://www.share4rare.org/news/case-undiagnosed-profiles-share4rare
On November 3, the Executive Secretary of ACCIÓ signed the resolution accrediting the TECNIO entities with the new TECNIO qualitity brand. One of them is the Research Center for Biomedical Engineering – CREB, that will certificate this quality until December 31, 2023. TECNIO accreditation allows technology developers as CREB UPC the following: using the TECNIO brand; getting visibility through the ACCIÓ website and other communication tools; getting information about ACCIÓ supporting activities and instruments; tutoring and advising on international cooperation and innovation; participating in programs managed by ACCIÓ; networking and / or marketing activities. TECNIO is the accreditation granted by the Generalitat of Catalonia through ACCIÓ to identify and give visibility to the technology developers of the R&D&I system of Catalonia.  This should help to encourage the activity of the Catalan technology market among technology generators, buyers, facilitators, and other collaborators in the process, such as consultants and business schools.
The kick-off meeting of the new Health Technologies Network was celebrated on November 3. The meeting was attended by most of 60 people representing the 47 research groups from Catalan universities, hospitals and technology centres. This project pursues improving the following objectives: (1) identifying the existing technologies; (2) reinforcing the visibility and external projection of R&D&I in health-technologies in Catalonia and their international alliances; (3) setting up an environment of excellence that encourages attraction and catalyzes talent; (4) contributing to the diversification and hybridization of technologies within the medical field; (5) promoting cooperation; (6) becoming a technological observatory to detect trends and opportunities of the health sector; (7) creating the mechanisms for the promotion and valorization of the Catalan health technologies; (8) providing a customized support to research groups in order to validate, push and launch their technologies into the market.
New Share4Rare event! On the second week of November, an international conference will take place virtually in order to present the patient registry of COVID-19 and rare diseases and to discuss diverse topics of interest related to the current pandemic. Do not miss it! The International Congress on the Effects of COVID-19 on People with Rare Diseases will be held on November 9-11th 2020 and it is organized by the Sant Joan de Déu Barcelona Children’s Hospital (Barcelona), the Sant Joan de Déu Foundation, the Garrahan Hospital and its Foundation (Buenos Aires) and two Argentinian patient organizations, ALAPA and FADEPOF. The congress arises from the recent creation of the international registry of patients with rare diseases and COVID-19, which aims to improve the current knowledge of the effects of this new infectious disease in rare disease patients. The initiative is fostered by Share4Rare, aimed at connecting and educating families affected by rare diseases, as well as promoting collaborative research through the sharing of clinical information from relatives and patients. The congress is addressed both at the scientific community and at patients and families, and will tackle different topics related to the current pandemic: study of new vaccines, psychosocial impact, consequences of the disease, access to treatments, healthcare models, etc. The event will be held online on 3 different days. There will be simultaneous translation into English of those sessions in Spanish. Here you will find the detailed program of the sessions and in this link you can register in those that interest you the most (there are 9 sessions, 3 per day): Dates:           November 9th         4:00 p.m. – 7:00 p.m. (Barcelona time)                                     12:00 a.m. – 3:00 p.m. (Argentina time) November 11th       4:00 p.m. – 7:00 p.m. (Barcelona time)                                     12:00 a.m. – 3:00 p.m. (Argentina time) November 13th       4:00 p.m. – 7:00 p.m. (Barcelona time)                                    12:00 a.m. – 3:00 p.m. (Argentina time)
Co-founder and scientific director of Rob Surgical (Bitrack robot), Dr. Amat is the 1st entrepreneur of CataloniaBioHT who receives this recognition. Congratulations! Josep Amat (Barcelona, ​​1940) has a long career dedicated to research in the field of surgical robotics. He is the author of multiple patents and books. Josep began his research in the field of digital systems, deriving to the design of processors specialized in radar signal processing, and image processing applied to computer vision. He later focused his research in the field of industrial, underwater and surgical robotics. Josep taught until 2010 as a professor at the ETSEIB, ​​and at the Faculty of Computer Science of Barcelona. He has been Emeritus Professor at the UPC ever since.