• Meeting the partners — Cliclab

    Cliclab is a transformative agent whose objective is to innovate the approach of entrepreneurs and companies with new methods. Cliclab is a personal and corporate transformation agency or, as they
  • 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
  • Tips for taking care of young caregivers. Let’s help those who help.

    Young and adult caregivers’ emotional and physical health are usually highly affected: anxiety, depression or feelings of isolation, lack of physical activity, unhealthy eating habits, etc. In this
  • What are the causes of neuroendocrine pancreatic tumors (pNETs)?

    Genetic origin of pNETs As it seems, there are several risk factors that may make a child or adolescent more likely to develop a neuroendocrine pancreatic tumor or pNET. These risk factors are
  • What is Proteus syndrome? Symptomatology and genetic origin

    As we mentioned in a previous article, PI3K related overgrowth syndromes, which include Proteus syndrome, have been linked to a mutation in AKT, (in this case the isoform AKT I) and has a prevalence
  • 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