January 27, 2010

Getting Ready for Rare Disease Day 2010

World Rare Disease Day 2010 will be held on February 28. Please join the Global Genes Project to help raise awareness for Rare Diseases of all types by wearing denim on Feb. 28. Please help me with brainstorming and planning an initiative to raise awareness and maybe some money for a Rare Disease charity!

According to the National Institutes of Health (NIH), 1 in 10 Americans suffers from a Rare Disease — that’s 30 Million people in the US alone! Collectively, Rare Disease is not so Rare! Join our campaign to help raise awareness by downloading your jean ribbon today and spreading the word!

Here are some facts on Rare Disease that you may not know:

  • A Rare Disease is life-threatening or chronically debilitating disease which is of such low prevalence that special combined efforts are needed to address them, such as Myoclonic-Astatic Epilepsy (Doose Syndrome) and Gaucher’s Disease.
  • Approximately 7000 different Rare Diseases exist, with countless awaiting researchers to identify. Bertrand can't wait for a researcher to identify with him. ;)
  • Today, Rare Diseases are not being invested in by pharmaceutical companies because of small patient populations and lack of financial incentives to Pharmaceutical and Biotech companies.
  • Pharmaceutical companies have only developed treatments for 200 of the 7000 rare diseases.
  • Approximately 75% of Rare Diseases affect children (22.5 million in the US).
  • 50% of the identified Rare Diseases have no foundations, support groups or community support for the families

Let’s never give up Hope! It’s In our Genes!

Video produced by Chris Hempel, mom to twin girls affected with the rare disease Niemann-Pick Type C.


  1. C - I wonder if grad students in genetics departments, and other bio departments, as well as medical school students and faculty would be a good target group for fundraising. Also I know my pediatrician's office has asked patients for donations to the March of Dimes; I could ask the office if they'd be willing to set up a similar thing for this organization.

  2. Excellent, educational video! I'll watch out for your initiative progress!
    Love, Titi Lili