An innovative and collaborative partnership between patients with rare disease and industry-supported registries: the Global aHUS Registry

Overview of attention for article published in Orphanet Journal of Rare Diseases, November 2016

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In the top 25% of all research outputs scored by Altmetric
High Attention Score compared to outputs of the same age (92nd percentile)
High Attention Score compared to outputs of the same age and source (97th percentile)

So far, Altmetric has seen 70 X posts from 25 X users, with an upper bound of 62,155 followers.

RT @ahusindia: Many in the aHUS space recognize the value of #patientengagement in #aHUS #raredisease #research, do you? #AtypicalHUS patie…

Many in the aHUS space recognize the value of #patientengagement in #aHUS #raredisease #research, do you? #AtypicalHUS patients & #advocates can deepen discussions. An Example: Collaboration re atypical HUS global patient registry https://t.co/31lwGcS

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