PATIENTS' DATA POWERING PROGRESS

The Power of Being Counted

The Power of Being Counted

A more accurate count of rare diseases and steps to getting counted.

The Power of Being Counted 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.

Authors:

  • Kirk Lamoreaux
  • Sebastien Lefebvre, M.S.
  • Daniel S. Levine
  • Wendy Erler
  • Tom Hume

Special thanks to the following people and organizations for their input and collaboration:

  • Alexion Pharmaceuticals
  • Chris Austin, M.D.
  • Katherine L Beaverson, M.S.
  • Nicole Boice
  • Jennifer Briggs Braswell, Ph.D.
  • Amy Brin, MSN, APRN, ACCN
  • Amy Clugston
  • Stan Crooke, M.D., Ph.D.
  • David Dimmock, M.D.
  • Peter Goodhand
  • Melissa A. Haendel, Ph.D.
  • Ada Hamosh, M.D., M.P.H.
  • Walter Kotoniuk, Ph.D.
  • Craig Martin
  • Tomi Pastinen, MD, Ph.D.
  • David Pearce, Ph.D.
  • Gianluca Pirozzi, Ph.D.
  • Ana Rath, M.D.
  •  Heidi Rehm, Ph.D.
  • Holly Snyder
  • Jackie Johnson Steinberg, MPH, BSN
  • Jamie Sullivan
  • James Valentine, MHC, J.D.
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