• 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
  • 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: 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
  • 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
  • Data for a difference — The Share4Rare research feature for patient organisations

    Violeta Astratinei is a Ph.D. biologist with a background in environmental research. After she lost her sister to melanoma in 2014, she became a core member of Melanoma Patient Network Europe, MPNE
  • Interview to Daniela Robles-Espinoza, researcher and expert in acral melanoma

    Dr. Daniela Robles-Espinoza, from International Laboratory for Human Genome Research (LIIGH) on the National Autonomous University of Mexico (UNAM), is an expert in acral melanoma, a very rare form of
  • New webinar — Patient advocates fostering research in oncology: the Share4Rare experience

    One of the pillars of Share4Rare is to enhance collaborative research. For that purpose, at the end of 2019 the platform started piloting four research projects concerning several groups of rare
  • ASCO 2020 — Free learning opportunity for patients!

    ASCO Annual Meetings are great opportunity for healthcare professionals and patients advocates all over the world to follow the latest scientific news in cancer research. Exceptionally this year, in
  • Why is understanding the natural history of a disease so important?

    We are currently in the middle of a global pandemic caused by the new SARS-CoV-2 coronavirus, which causes a disease (COVID-19) that was completely unknown a few months ago, even to the medical and
  • Free access to this year’s ASCO for patients - Register now!

    The annual congress of ASCO (American Society for Clinical Oncology) is the world’s largest oncology meeting. Last year over 30,000 people attended! ASCO is one of the congresses where the very latest
  • María Cecilia Foundation: improving the lives of families affected by childhood cancer

    The María Cecilia Foundation was established in 1991 by a group of parents of children diagnosed with cancer. Through their experiences, they envisioned to give life to an organization that could help