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
Let make sure next year we all have the ribbons because without them it is just a pair of jeans.
I have just found your blog tonight and am enjoying it, can’t wait to read more. I promise to not post my blog on everything I read, but here is my rare disease day post: http://vandemom2.wordpress.com/2014/02/27/rare-disease-day-a-chance-to-talk-about-prader-willi-syndrome/
Thank you for reading and sharing as well!!!