More importantly for me and the rare ones like me, today we celebrate Rare Disease day for 2017. I have spasmodic torticollis commonly referred to as cervical dystonia. It is a rare, neurological movement disorder that causes involuntary muscle contractions and spasms to the neck, shoulders, and head. CD affects roughly 9 to 30 out of every 100,00 people in the US. Currently, there is no cure. But dystonia is only one out of over 6,000 rare diseases.
What is rare disease day?
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.The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. (taken from rarediseaseday.org)
For more information visit Rare Disease Day website