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 

Over 7,000 Rare Diseases

There are over 7,000 Rare Diseases. 7000-Rare-Diseases---February-is-Rare-Disease-Month

While each of the 7,000 diseases may be rare, when you add them all up they affect 30 million Americans … 30 million Europeans … 350 million around the globe … 1 of every 10 people have a Rare Disease.

Most of the muscular dystrophies are rare … cystic fibrosis is rare … many cancers are rare .. and metachromatic leukodystrophy is very rare, affecting 1 in 40,000 births with 1 in 100 of the general public being a carrier.

rdd-logo-transparent-small
February is Rare Disease month, culminating on February 29th – a Rare Day indeed – which is Rare Disease Day.
Stay tuned for month of Rare Disease facts, tidbits and things to know.

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1 in 10 Have a Rare Disease

1 person in every 10 people has a Rare Disease. 1 in 10 - February Rare Disease Month square

 

30 million Americans … 30 million Europeans … 350 million around the globe … all with Rare Disease.

Pause for a moment and think about your family and those that live around you … many cancers and most childhood diseases are Rare Diseases.  On my block of 30 homes I know of three with Rare Disease … 1 in 10!

rdd-logo-transparent-small
February is Rare Disease month, culminating on February 29th – a Rare Day indeed – which is Rare Disease Day.
Stay tuned for month of Rare Disease facts, tidbits and things to know.

Sign up to follow this blog and be sure to share this post.