As it seems this the month of RARE--think about it like we have leap year every 4 years. This is also the month to share & acknowledge people living with a Rare Genetic (Disease) Syndrome; as I prefer to call it (disease sounds nasty & scary--just my opinion).

As we know there is so many different syndromes and diagnoses that have been considered  rare that are celebrated on this day.

What is RARE Disease Day?
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

What is a RARE Disease? 
A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.
  • 50% of rare diseases touch children.
  • Kleefstra Syndrome has about 300 cases worldwide

For more information on RARE Day visit www.rarediseaseday.org 

For more information on Kleefstra visit http://kleefstrasyndrome.org