PATIENTS' DATA POWERING PROGRESS

The Power of Being Counted Report

RARE-X announced that through the development of its new ‘The Power of Being Counted’ Report, it has discovered that there are as many as 10,867 rare diseases, rather than the oft-reported previous estimate of 5,000-8,000. The report uncovers rare diseases that were previously uncounted, unrecognized, and therefore, below the radar of clinical research teams working to discover new treatments. It includes insights from more than 20 notable organizations and individuals in the rare disease community. In addition to the analysis, the report outlines steps patient communities and researchers can take to share data and published research to ensure diseases are entered into knowledge bases to enable the discovery and development of better treatment and support for their diseases.

RARE-Xtra Podcast Host, Daniel Levine spoke to the data scientist for the report, Sebastien Lefebvre, RARE-X CEO Charlene Son Rigby, and VP of Patient Experience at Alexion Pharmaceuticals, Wendy Erler.

To read the full report click here

For a Transcript of the Podcast click:RARE Xtra Podcast The Power Of Being Counted Final Transcript 2022 (1)

 

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