Tomorrow is #rarediseaseday - a day chosen to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. The reality is 1 in 20 people will suffer from a rare disease at some point in their lives! As you all know by now, Lily has a rare genetic disorder called Prader-Willi Syndrome.
Currently 90% of rare disorders DON’T have an FDA approve treatment, includeing PWS. This is why it is so important to raise awareness, so we can advance and find better treatments or a possible "cure" for the symptoms of PWS.
The zebra is the official symbol of rare diseases in the United States and its noted its black and white stripes, which are central to its uniqueness. Everyone has their own stripes, those characteristics that make each individual distinct. While each of the more than 7,000 rare diseases are unique, there are many commonalities that unite patients, families, caregivers and supporters.
Please join us tomorrow and #ShowYourStripes for Lily.
Also, all donations made to The Foundation for Prader-Willi Research are being matched. This is your change to double your impact and help us find better treatments for Lily and individuals living with Prader Willi Syndrome.
#rarediseaseday2020 #praderwillisyndrome #medicalresearch #wesupportrare #fpwr