• 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
  • 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
  • COVID-19, an additional burden for melanoma and all cancer patients

    Violeta, thank you for taking the time for this interview. You have recently conducted a research study into how COVID affected melanoma patients in Romania. Can you tell us something about what you
  • 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
  • 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
  • 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
  • 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
  • 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