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Advocacy Awareness Education General

A Call for Rare Facts Unity & Consistency

It’s Our Opinion …

I presented this poster at the NIH’s Rare Disease Day event earlier this week (2/27/17).  In short, to maximize impact and credibility, we are asking all organizations – government, advocacy, industry/pharma, academia, etc. to be consistent with their public sharing of Rare Disease facts.

I realize that sometimes we must be very scientific about things, but for basic Rare Disease awareness, where there are no absolute numbers, we need to be consistent in order to be most credible and impactful.

We suggest that this should be our common voice with regard to Rare Disease Facts:

  • 7,000+ rare diseases
  • over 80% of Rare Diseases are genetic
  • 1 in 10 have a rare disease … over 30 million Americans, 350m worldwide
  • over 50% of which are children
  • 30% of those children will not live to see their 5th birthday
  • <5% of rare diseases have approved therapies
  • and as of early 2017 only a few hundred rare diseases have therapies … 95% do not have a therapy!

A good source

Global Genes presents a nice summary of these Rare Disease facts, and more,  on their Rare Disease Facts page.

* images source: Global Genes