• Try these 5 tips to strengthen your patient advocacy effort

    The following steps will help you set the groundwork on which to build and maximise your chances of success. In the Share4Rare Toolkit for Patient Advocacy, we explain exactly how to do this practice
  • 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
  • Patient advocates: this toolkit should be on your holiday reading list

    “The Share4Rare Toolkit for Patient Advocacy is a very well-designed toolkit that helped me a lot. It gave me the much-needed organisational support and ideas, and ways to innovate my practice. Mainly
  • Interview to Verónica Zofío — Affected by lymphangioleiomyomatosis

    Verónica Zofío is the marketing manager of an environmental laboratory. She is 40 years old and was born and raised in La Vall d'Uixó, Castellón (Spain). Six years ago she had a pneumothorax
  • 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
  • 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
  • Interview to Joan Carles — Father of a girl with retinoblastoma

    Joan Carles does not forget that day: “Júlia was diagnosed on May 29th 2018, when she was a few months old. The symptom that she presented at that time was the strabismus of the left eye. That was
  • The burden of care

    Gilly, thank you for taking the time for this interview. When thinking about cancer, many will think about the burden of disease- you have however argued for a long time that there is also a burden of