The importance of educating patients and families about the science of rare diseases
Science shapes our daily lives — see for example to what extent the COVID-19 pandemic outbreak has affected us and how science is continuously trying to solve this misfortune —, influencing many of
7 tips to organise a successful global online training for your rare disease community
Organising a training on a global scale can seem daunting at first. But when done right, you have created a connected community and move forward with a joint strategy that can benefit all. Are you
Share4Rare End Event: setting the path for next generation data sharing in rare diseases
Rare disease patients and their families have the right to be part of a community, wherever they are in the world. It is equally important that research that is performed will benefit the patient
Research study on neuromuscular diseases: interactive session with 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
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
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
#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
Wednesday is Share4Rare User Day
In 2020 hundreds of people from 50 countries were connected in the Share4Rare community. The pandemic has forced us to include technology in our day to day life and you may have some doubts about the
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
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
Duchenne Patient Academy 2020: a leading worldwide patient advocacy event on neuromuscular conditions
Duchenne Patient Academy works in partnership with leading DMD patient organisations to set a strong patient advocacy base for patient organisations and the Duchenne and Becker community at large. We
Interview to Daniela Robles-Espinoza, researcher and expert in acral melanoma
Dr. Daniela Robles-Espinoza, from International Laboratory for Human Genome Research (LIIGH) on the National Autonomous University of Mexico (UNAM), is an expert in acral melanoma, a very rare form of