“Platforms like Share4Rare are extremely important in sharing evidence-based information and raising awareness of rare diseases” — Ana Pudja, project manager at CLOSER
Passionate about working for a purpose and committed to contributing to improvements of human health globally, Ana enjoys working in the fields of childhood cancer, cancer genetics and precision
Share4Rare launches the 1st open call for patient-driven research projects
Share4Rare invites patient organisations and researchers in the field of rare diseases to apply for conducting their patient-centred studies within the platform. The ambition of Share4Rare is to put
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
Meeting the partners — The Synergist
They say it takes a village, and the rare diseases community is just that - a tight knit group with a sense of camaraderie and fellowship. This is the power of Share4Rare - creating a platform where
The burden of care
Gilly, thank you for taking the time for this interview. When thinking about cancer, many will think about the burden of disease- you have however argued for a long time that there is also a burden of
COVID-19, an additional burden for melanoma and all cancer patients
Violeta, thank you for taking the time for this interview. You have recently conducted a research study into how COVID affected melanoma patients in Romania. Can you tell us something about what you
Interview to Àngels Puigvert — Mother of a girl with megalencephaly-capillary malformation syndrome
Àngels Puigvert's life is anything but calm, but he was able to find some time to answer some questions about her daughter and the work carried out by her association. Thank you Àngels! "Queralt was
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
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