Fondation Ipsen

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Accelarating the dissemination of knowledge on rare disease

Accelarating the dissemination of knowledge on rare disease

This program aims to develop Orphanet’s rare disease ecosystem knowledge base and producing the rare disease community’s newsletter, OrphaNews International

 

Orphanet is a unique resource, gathering and improving knowledge on rare diseases so as to improve the diagnosis, care and treatment of patients with rare diseases.

 

 

  • Develop and improve Orphanet’s rare disease ecosystem knowledge base and capacity for analysis. OrphaNews provides a showcase for the activities and publications of the European Reference Networks for Rare Diseases, the European Commission designated networks of expertise aimed at promoting healthcare and research, and as such promotes cooperation and information exchange. Ultimately the newsletter helps support the progress towards health promotion and non-communicable disease prevention in Europe to reach the United Nations Sustainable Development Goal 3.4 and the nine UN/WHO global voluntary targets, by providing access to information to all stakeholders on the RD ecosystem.

 

  • Produce a twice-monthly newsletter for the multistaker rare disease community presenting the latest developments in the rare disease ecosystem.
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