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Report . 2025
License: CC BY
Data sources: Datacite
ZENODO
Report . 2025
License: CC BY
Data sources: Datacite
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Rare disease expertise, centers and networks - Results of a public survey

Authors: Rare Diseases International;

Rare disease expertise, centers and networks - Results of a public survey

Abstract

This report presents the findings from the Public Survey on rare disease expertise, centers, and networks. The survey aimed to: Map expertise and centers dedicated to rare diseases and understand their key characteristics; Examine the criteria used for the recognition of rare disease centers; Explore existing collaboration between experts and between centers. This study was led by Rare Diseases International. The survey was developed in collaboration with a small group of RDI members and experts.

Keywords

Rare Diseases, network, expertise, centers

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selected citations
These citations are derived from selected sources.
This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Citations provided by BIP!
popularity
This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
BIP!Popularity provided by BIP!
influence
This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Influence provided by BIP!
impulse
This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
BIP!Impulse provided by BIP!
0
Average
Average
Average
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