This app helps families with children suffering from a rare disease to communicate better with health professionals. There are 7 challenges to help families overcome the different medical situations that often arise. Each of the challenges has a video with words from families and professionals, an explanatory text, responses to possible doubts, a basic glossary of medical terminology, advice, resources and links.
Development of the app involved linguists, psychologists and doctors from Pompeu Fabra University, Universitat Oberta de Catalunya, and the Molecular and Clinical Genetics department and the Rare Diseases unit at Vall d'Hebron Hospital. It also involved participation from the Spanish Federation for Rare Diseases (FEDER) and families who are members of the federation. It was developed as part of the RecerCaixa JUNTS project.
Registration now open. Sign up here. We look forward to seeing you at 6 pm on Thursday 6 September in the Beta Room at CosmoCaixa!