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
“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