New study on Share4Rare: Barefoot-style shoes for children with Epidermolysis bullosa simplex
Epidermolysis bullosa (EB) is a group of rare genetic disorders characterised by extreme skin fragility and mucous membranes, leading to blisters and wounds. It is present from birth and currently has
Selection of research projects based on patient-reported data 2025
Under the new Share4Rare service portfolio and to encourage research on rare diseases, we are now accepting proposals to implement research projects on the platform. This process is open to patient
Biobanks: Research allies. A new episode of Rare Horizons.
One of the greatest challenges in rare disease research is the limited availability of biological samples. We all know that studies based on small sample sizes often yield less conclusive results than
Funding for the best collaborative research initiative: extension of the deadline for the Share4Rare Call4Projects
In response to inquiries and requests from those interested in this year's project call, Share4Rare will grant funding to the best collaborative research initiative based on data reported by patients
Rare Horizons episode 2 focuses on people living without a diagnosis
People need to name things. Naming is our way of creating some order in this chaotic world. Unfortunately, many people are not able to name their disease. In Europe, it takes an average of five years
Share4Rare will host a webinar on the 2024 research project call
Share4Rare aims to enhance research on rare diseases through collaborative knowledge generation. The platform provides researchers with a secure infrastructure to conduct their investigations
Rare Horizons, a new podcast focused on rare disease research
Education stands as a key pillar of Share4Rare. Thus, we are constantly working to provide the rare disease community with tools and resources to better understand the various research dimensions of
Únicas SJD building construction begins in Barcelona, dedicated to rare disease care and research
The new building will rise 250 metres from the Sant Joan de Déu Hospital, situated between the municipalities of Barcelona and Esplugues de Llobregat (Barcelona province, Spain). Its main facade will
4th Share4Rare Call4Projects to drive rare disease patient-driven research studies
Collaborative research into rare diseases stands as one of the cornerstones of Share4Rare. Year after year, we endeavour to foster the development of research projects in this field that focus on the
Ken To — Caregiver in a family impacted by Huntington’s disease
As Ken To states, being part of a family affected by Huntington's disease is challenging. The disease may manifest at any stage of adulthood and, currently, it does not have a cure. “ Growing up in a
Nerea González — Affected by a mitochondrial disease and a member of AEPMI
Nerea González defines herself as a " Mito Warrior," a fighter who refuses to surrender to adversity. And she knows a lot about adversity. One of the conditions she suffers from is Coenzyme Q10
Marta Farré — Mother of a boy with epidermolysis bullosa
When Adrià was born, doctors noticed that he had severe wounds on his legs and feet. The gynaecologist who attended to them first mentioned the disease: epidermolysis bullosa (EB), a genetic condition