This document summarises the conference “Medicines for Rare Diseases and Children: Learning from the Past, Looking to the
Future”
Rare Disease
EURORDIS’ Community Advisory Boards
Published by IRDiRC
Community Advisory BoardEurordisMedical ResearchOrphan Drug DevelopmentPatient AdvocatePatient InformationPatient OrganisationRare DiseaseResearch and Drug DevelopmentPatient Community Advisory Boards are groups established and operated by patient advocates. They facilitate discussions in a safe harbour setting and under strict rules, an MOU and CA on the latest developments and challenges related to medical research and procedures in a disease area with the company or body conducting the research. The CAB can cover from preclinical to post marketing topics. The CAB depending on the areas of discussion can invite scientific expert to serve as advisors.
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European Reference Networks
Published by IRDiRC
Clinical CollaborationEuropean Reference NetworkNetworkRare DiseaseResearch and Drug DevelopmentResearch CollaborationParticipating in research provides patients with access to cutting-edge treatments and benefit the population and the health services as a whole by leading to the development of more effective, high quality, cost-efficient treatments and healthcare delivery models. ERNs represent an unicum in the clinical and research worldwide collaborative panorama, indeed 24 ERNs span the over 6000 rare diseases by involving 300 EU HCPs and over 1000 specialized units in 25 EU countries
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