• 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
  • Sant Joan de Déu Barcelona Children's Hospital and FEDER join forces to tackle rare diseases

    The new collaboration agreement between Barcelona's hospital and the Spanish umbrella organisation aims to drive knowledge-sharing, enhance coordination, and foster experiential exchange through
  • Victoria Castillo — Mother of a young man with arthrogryposis

    Arthrogryposis is not a specific disease, but a group of disorders with diverse symptoms, all of which ultimately impact the joints and muscles in the body. A diagnosis of arthrogryposis is given when
  • Gisela Guevara — Madre de una joven con dermatomiositis juvenil

    Ana comenzó a tener problemas de salud de un día para otro. Al principio le aparecieron lesiones cutáneas en codos y rodillas que se confundieron por dermatitis atópica, pero con el tiempo los