Reference:
Danijela Vlajic
Abstract:
The European Project for Rare Diseases National Plans Development (EUROPLAN) has addressed one unanswered question to date: ﾓwhat is the scope of patient-driven research?ﾔ Identification of needs and priorities for translational and social research, modes of fostering them and promotion of interdisciplinary cooperative approaches has been largely recommended. Beside the success stories of ﾓorphan drug developmentﾔ and genetic research during the last decades, family story telling and family sketches analysis show minor progress in the clinical management and day to day care despite tremendous unmet needs. Quality of Life and measurements of the burden of the disease have been neglected. A call to action for active research in the field of human and social sciences is urgent.
PROJECT DETAILS
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end: n.a
Country of research: France
Counry of funding source: EU
Funding organization: Rett Syndrome Europe
Financing: PRIVATE FUNDERS – 0 €