• 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
  • “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
  • 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
  • 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
  • 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
  • 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