The bright side of 2020: what we have done and achieved in Share4Rare
The New Year began with the launch of a research project aimed at studying the long-term adverse effects of paediatric acute lymphoblastic leukaemia, which was added to the pilot projects opened in
Meeting the partners — UPC. How technology is used to connect and educate the rare disease world.
Universitat Politècnica de Catalunya – BarcelonaTech (UPC) is a public institution for research and higher education in engineering, architecture, sciences, and technology. By providing solid
The Share4Rare research project on neuromuscular rare diseases: analysing how the disease affects employment and education
The Share4Rare platform is growing in strength, with over 900 users validated since April 2019. This growing community of rare disease patients and families is providing a secure environment for
Report - 3rd day of the International Congress on the Effects of COVID-19 in People with Rare Diseases
The challenge of undiagnosed patients: challenges and needs Dr. Marcelo Andrade opened the first table of the third day of the congress. This paediatrician at the Sant Joan de Déu Hospital explained
Report - 2nd day of the International Congress on the Effects of COVID-19 in People with Rare Diseases
Emotional support to the affected people: the role of patient organizations and virtual communities Roberta Anido de Pena (president of FADEPOF) opened the session with a panel that discussed the role
Report - 1st day of the International Congress on the Effects of COVID-19 in People with Rare Diseases
The opening of the congress was led by Patricia García, medical director of the Garrahan Hospital, a reference centre for rare diseases in Argentina. García explained the challenge that COVID-19
The international patient registry for COVID-19 and rare diseases is now available for clinicians
People with a rare disease are vulnerable, but this vulnerability is currently being exacerbated by the global COVID-19 pandemic. Sant Joan de Déu Barcelona Children’s Hospital, together with the Sant
Meeting the partners — Òmada Interactiva
The approach of Òmada was classic, yet revolutionary. After conducting a preliminary analysis and benchmarking, the initial graphic, functional and technological design of the open layer of the
Dr. Marcelo Andrade: "Our intention is to include patients, families and health professionals from around the world in the registry of COVID-19 and rare diseases"
Through collaboration between Sant Joan de Déu and Garrahan Hospital, an ambitious project that connects COVID-19 and rare diseases has been developed. The initiative has supported the creation of a
International Congress on the Effects of COVID-19 on People with Rare Diseases
The International Congress on the Effects of COVID-19 on People with Rare Diseases will be held on November 9-11 th 2020 and it is organized by the Sant Joan de Déu Barcelona Children's Hospital
Lessons learned: Share4Rare’s new Digital Informed Consent
All around the globe, 2020 has brought with it a lot of downs. However, it has also brought some very valuable ups, mainly in the form of lessons learnt and powerful insights into what we are capable
The case of undiagnosed profiles in Share4Rare
Share4Rare has very nice support for patient profiles with a diagnosis. These users will find that Share4Rare is a system in which they can interact, communicate, and share knowledge with other users