Meet Begonya Nafria Escalera and the Share4Rare Project

Barecelona, March 18th, 2019 - Last year, our own International Children's Advisory Network (iCAN) Kids Impacting Disease Through Science (KIDS) Barcelona Chapter Leader, Begonya Nafria Escalera embarked on a collaborative project designed to create positive support towards rare diseases through the use of social media platforms. This exciting project is known as Share4Rare (S4R). S4R is comprised of engaged supporters (young people, patients, researchers, families/volunteers, public health representatives, health professionals) that are passionate and desire to create positive healthcare improvements. S4R builds on existing rare disease, systems and advocacy knowledge and initiatives, to ensure there is a focus on co-creation, innovation, science, research and advocacy through a unique shared data and a patient centered approach. Founded on three important pillars: Education, Sharing and Research, S4R is funded by the European Union’s Horizon 2020 research and innovation programme and is coordinated by the Sant Joan de Déu Foundation. Currently, the S4R initiative is focusing a pilot scientific

study to collect and measure the methodology of collective intelligence in order to generate new scientific knowledge in the field of rare diseases. With the aim to test and improve the tools that will collect clinical data from patients and parents, the S4R will focus on Neuromuscular Disorders and Pediatric Rare Tumors throughout 2019 and 2020. For contact information and to learn more, visit https://www.share4rare.org/press


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