In January 2019, the European Joint Programme on Rare Diseases (EJPRD) started its activities aimed to create a comprehensive, sustainable system allowing virtuous circle between research, care and medical innovation. TEDDY Network is among the beneficiaries of this new Co-fund action and provides its contribution in this programme intended to create a research and innovation pipeline “from bench to bedside”, ensuring a rapid translation of research results into clinical applications and uptake in healthcare for the benefit of the patients. Starting from 2021 (and for the three-years period 2021-2023) TEDDY will be actively involved in the activities of the Pillar 3 WP15, aimed to provide ‘paediatric patient experts training courses’ on the themes of rare diseases, as well as in the project Communication and Dissemination activities (Pillar 0, WP5). In particular, the planned activities include short workshops in collaboration with Fundaciò Sant Joan de Deu, EURORDIS and the eYPAGnet (the European Young Persons’ Advisory Group network) for 15 patients’ representatives focusing on the following areas:
- Genetic / rare diseases characteristics and evolution
- Role for paediatric patients and relevance of clinical and translational research (including patients’ engagement in clinical trials, the consent issue, the patient-reported outcomes in the context of paediatric rare diseases)
- Orphan Medicinal Products availability and access for paediatric patients on the EU market, pharmacovigilance and off-label use in paediatric setting
TEDDY will be central to further engage and empower rare disease patients into research and provide them with the tools required to apprehend and actively contribute to innovation and therapy development.
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