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
“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
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
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
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
