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About the Rare Disease COA Consortium

Our Vision

To be an essential catalyst in medical product development for measuring what matters to people with rare diseases.

Our Mission

To enable precompetitive, multi-stakeholder collaboration aimed at identifying scientifically sound tools and methodologies for collecting clinically meaningful outcomes data in treatment trials for rare diseases.

Scientific Strategy

  1. Expand the Rare Disease Clinical Outcome Assessment (COA) Resource into new domains of published COAs that have the potential to be used to support efficacy endpoints in treatment trials for rare diseases;
  2. Promote collaboration and education, and share learnings among member firms and consortium members to expedite innovations in rare clinical trial science; and
  3. Advance solutions for methodological and measurement challenges in rare disease by engaging teams of experts focused on dissemination.

Acknowledgement of Federal Support

Funding for the establishment of the Rare Disease COA Consortium was made possible, in part, by the Food and Drug Administration through grant (U01FD006). Views expressed in written materials or publications and by speakers and moderators do not necessarily reflect the official policies of the Department of Health and Human Services; nor does any mention of trade names, commercial practices, or organization imply endorsement by the United States Government.


For questions or additional information about membership in the Rare Disease COA Consortium, please visit or contact Lindsey Murray at

Inquiries regarding updates to the Rare Disease COA Resource can be sent to