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January, 2012 | The Addi and Cassi Fund - Niemann Pick Type C

Friday, October 15, 2021

Rare Disease Day 2012 – Spread This Call To Action To Make A Difference!

January 15, 2012 by  
Filed under Featured Stories

Call To Action: Join the RARE team on Facebook!

World Rare Disease Day 2012 is coming up on February 29th.  Consider these staggering statistics.

  • Each year, 139 BILLION U.S. dollars are invested in medical research — much of it from tax payers
  • Each year, 800,000 papers are published in medical journals by scientists
  • Each year on average, ONLY 21 new drugs are approved by the FDA for all diseases

Only 21 FDA approved new drugs per year after all this money and research effort?!  Does anyone else think that something is seriously wrong? Thanks to the Myelin Repair Foundation and Scott Johnson for creating this amazing video outlining these shocking statistics.

1 in 10 Americans are affected by some type of a rare disease. That’s a huge number of people – 30 million according to the NIH. The  amount of drug approvals for the entire rare disease community each year is extremely low – potentially only 5 or so drugs a year out of the 21 total drugs the FDA approves.  To date, only 5% of rare diseases have a treatment!  For 95% of rare diseases, there is not a single approved treatment.

There are 7,000 different types of rare diseases – from Amyotrophic Lateral Sclerosis (Lou Gehrig disease) to Ewing’s Sarcoma to Friedreich’s Ataxia to Cystic Fibrosis to Hemophilia to Krabbe disease to Langerhans Cell Histiocytosis.  My twins have a fatal rare disease called Niemann Pick Type C and are currently fighting for their lives.

Please help people with rare diseases today by taking action to raise awareness for all people who have no treatments, let alone cures.


— Join the “1 Million for Rare Disease ” awareness movement by displaying the 1 Million Logo on to your website or Facebook page.  Write about how a rare disease you or a loved one suffers from impacts your family.

— “Like” the Global Genes Project on Facebook: http://www.facebook.com/globalgenesproject.

— Get involved with the Rare Project and Global Genes Project and spread the word to your social network

— Write tweets: @GlobalGenes. Use: #1Mil4RARE

— Wear Jeans and a Denim Ribbon on Rare Disease Day and consider holding a “jeans party” to raise money for your rare disease

— Get a Denim Ribbon Kit from the Global Genes Project and make blue ribbons to spread  awareness.  Contact amyg@rareproject.org to order ribbons or kits.

— Tell friends and family about this awareness campaign by forwarding this blog, re-posting on Facebook, etc.  Just as the breast cancer community has come together, we need supporters to join together to demand action and change.

Please consider spreading my “call to actions” and join the effort to raise awareness during the month of February.  Write a blog like mine that lists other rare diseases to help spread awareness.

Hope – It’s in our Genes!