• 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
  • 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: 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 Manuel Rodrigues — Expert in conjunctival melanoma

    General information on conjunctival melanoma Conjunctival melanoma (ConjMel) is an adult ocular melanoma arising from conjunctiva, the visible ocular extern mucosa covering not only the anterior part
  • Meeting the partners — UPC. How technology is used to connect and educate the rare disease world.

    Universitat Politècnica de Catalunya – BarcelonaTech (UPC) is a public institution for research and higher education in engineering, architecture, sciences, and technology. By providing solid
  • The Share4Rare research project on neuromuscular rare diseases: analysing how the disease affects employment and education

    The Share4Rare platform is growing in strength, with over 900 users validated since April 2019. This growing community of rare disease patients and families is providing a secure environment for