Don’t forget to wear your favorite jeans tomorrow to support Rare Disease Day!
Did you know?
FACT: In the United States, a condition is considered “rare” if it affects fewer than 200,000 persons combined in a particular rare disease group. International definitions on rare diseases vary. For example in the UK, a disease is considered rare if it affects fewer than 50,000 citizens per disease.
FACT: There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day.
Our Siena has two of these rare diseases. She was diagnosed with Prader-Willi Syndrome in 2011 and just last week diagnosed with Narcolepsy (complete list of rare diseases on website link below). We are fortunate to have a very active community of parents, doctors and researchers that are making major movements in the PWS world…. but for many with rare diseases this is not the case.
FACT : Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease.
PLEASE REMEMBER TO “WEAR THAT YOU CARE”! Thank you xoxo