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: How to navigate psychological care in neuromuscular conditions
The field of rare neuromuscular diseases houses many types of conditions, each with its own disease expression. One thing they all have in common is that being or caring for an individual with a
#S4RMonth activity: Childhood Cancer and Rare Tumours Week
The third week of #S4RMonth will be dedicated to give visibility to childhood cancer and the different research projects on tumours and rare oncological diseases offered by the Share4Rare platform
#S4RMonth activity: Caring for caregivers and patients in pandemic times
As you may already know, throughout the February we are celebrating #S4RMonth, an extensive calendar of educational and sharing activities framed in the commemoration of Rare Disease Day, which takes
Meeting the partners — World Duchenne Organization
The World Duchenne Organization (WDO) is one of the two patient organisations joining Share4Rare as project partner. Dimitrios Athanasiou, WDO board member and father of a boy with Duchenne, did not
#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
An interview with Jeffrey Galuidi — Father of a young boy with congenital myasthenic syndrome
Jeffrey Galuidi is Jackson’s father, a young boy with congenital myasthenic syndrome (CMS), a rare neuromuscular disease. “Jackson was diagnosed with a general muscle wasting condition a couple of
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
