Research Study for NMD: interactive session with UK families
In this session we will explain the Share4Rare research project on neuromuscular diseases . This study collects information about quality of life/burden of the pathology and the impact of the disease
Dr. Pablo Barvosa: "Data sharing will help us know COVID-19 better"
He has been one of the thinking heads of our international registry of patients with COVID-19 and rare diseases. Dr. Pablo Barvosa is a pediatrician with extensive experience in the Argentinian health
COVID-19 and rare diseases: boosting research to improve care
As part of the recent celebration of Rare Disease Day, the CREER Foundation (Spanish reference care centre for rare diseases) held an open day for professionals and affected people to share the latest
Meeting the partners — Sant Joan de Déu Research Foundation
“ Starting in 2015, we have a dedicated department to include patients and caregivers in research projects”, explains Begonya Nafria, the hospital’s Patient Engagement in Research Coordinator. “ This
The burden of melanoma and why we need patient-driven research
Bettina, thank you for taking the time for this interview today. MPNE is one of the Share4Rare project partners and is launching a research project into the burden of melanoma on the platform. Could
Dr. Ofelia Cruz: “Patients are the main characters of the disease and research must support their needs”
Behind every Share4Rare research project, there are great medical researchers. Dr. Ofelia Cruz is one of these professionals, and she participates in the study that seeks to detail as much as possible
#S4RMonth activity: The role of genetics in the diagnosis of rare diseases
In Share4Rare we will celebrate throughout February an initiative within the framework of the activities that will take place globally as part of Rare Disease Day: #S4RMonth. Each week of February
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 - 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
