• 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
  • 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
  • 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
  • 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
  • Report - 3rd day of the International Congress on the Effects of COVID-19 in People with Rare Diseases

    The challenge of undiagnosed patients: challenges and needs Dr. Marcelo Andrade opened the first table of the third day of the congress. This paediatrician at the Sant Joan de Déu Hospital explained