RARE-X Releases New Report that Uncovers Large Number of Previously Uncounted Rare Diseases

RARE-X Releases New Report that Uncovers Large Number of Previously Uncounted Rare Diseases

Jun 07, 2022 by Businesswire

Key Facts

  • WASHINGTON--(BUSINESS WIRE)--RARE-X, a nonprofit organization dedicated to enabling patient communities to easily collect, manage, connect, and share their de-identified data, today 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
  • i > “The challenge with rare diseases lies in the inability to receive care and treatment due to the lack of data and awareness of the disease” > > Tweet this The report uncovers rare diseases that were previously uncounted, unrecognized, and therefore, below the radar of clinical research teams working to discover new treatments.
  • A rare disease is defined as a disease or condition that affects less than 200,000 people in the U.S.ii “The challenge with rare diseases lies in the inability to receive care and treatment due to the lack of data and awareness of the disease,” said Kirk Lamoreaux, author of “The Power of Being Counted” Report.
  • “Our goal in uncovering an accurate estimate of rare diseases is to raise awareness of the undercounted number among researchers, policymakers and insurers, while empowering patients to get their disease counted.

Click To Read Full Article

GEOGRAPHY
WORK OF ART
PERSON
LAW
MISCELLANEOUS

This story was produced by the Kwhen Automated News Generator. For more articles like this, please visit us at finance.kwhen.com. Write to editors@kwhen.com. © 2021 Kwhen Inc.

Was this content valuable for you?