• The importance of educating patients and families about the science of rare diseases

    Science shapes our daily lives — see for example to what extent the COVID-19 pandemic outbreak has affected us and how science is continuously trying to solve this misfortune —, influencing many of
  • New Share4Rare study on health-related quality of life in people living with rare diseases

    The Share4Rare platform is growing day by day. Our safe space is taking in patients and families from all over the world to share knowledge and expertise and boost patient-centred research projects
  • What is whole genome sequencing and how can it help rare disease research?

    A recent paper published in the New England Journal of Medicine reveals that the group of techniques known as whole genome sequencing (WGS) can be of great help on rare disease diagnosis. Through this
  • Interview with Dr. Eulàlia Baselga, leader of the Share4Rare project on vascular malformations

    Eulàlia Baselga has been working on paediatric dermatology for almost 30 years. Her main line of research are vascular malformations, which, in her words, "are very different from patient to patient
  • Share4Rare study of sleep abnormalities in SYNGAP-1 syndrome

    SYNGAP-1 syndrome is an ultra-rare disease caused by a mutation in the SYNGAP1 gene, involved in brain development. Children born with a mutation in this gene are affected by a wide range of symptoms
  • New Share4Rare study on the description of the natural history of vasculopathies

    Vascular anomalies are alterations in the development of the vascular system produced by mutations in different genes. Those anomalies can present a wide variety of symptoms that may differ in each
  • Share4Rare Call4Projects 2022 for patient-centred research initiatives

    Share4Rare aims to put rare diseases patients at the centre of research, not only by asking them directly regarding their condition but also by providing them a safe platform where they can
  • The Share4Rare End Event was a successful closure meeting

    Loretta Anania, Programme Officer with the European Commission and DG CONNECT, opened the meeting. “Having a patient-centred approach was something really exceptional. [Share4Rare] was part of the
  • “Platforms like Share4Rare are extremely important in sharing evidence-based information and raising awareness of rare diseases” — Ana Pudja, project manager at CLOSER

    Passionate about working for a purpose and committed to contributing to improvements of human health globally, Ana enjoys working in the fields of childhood cancer, cancer genetics and precision
  • Share4Rare launches the 1st open call for patient-driven research projects

    Share4Rare invites patient organisations and researchers in the field of rare diseases to apply for conducting their patient-centred studies within the platform. The ambition of Share4Rare is to put
  • Share4Rare End Event: setting the path for next generation data sharing in rare diseases

    Rare disease patients and their families have the right to be part of a community, wherever they are in the world. It is equally important that research that is performed will benefit the patient
  • Meeting the partners — The Synergist

    They say it takes a village, and the rare diseases community is just that - a tight knit group with a sense of camaraderie and fellowship. This is the power of Share4Rare - creating a platform where