Today is Rare Disease Day.
A disease or disorder is defined as rare in the US when it affects fewer than 200,000 Americans at any given time.
A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.
Spontaneous spinal CSF leak is considered rare in the USA with an estimated incidence of 1 in 20,000 per year, although this may be an underestimate, related to low recognition rates. Spinal CSF leaks arising from medical procedures may be more common than spontaneous leaks but the prevalence has not been well-studied. Many patients with spontaneous spinal CSF leak have an underlying genetic connective tissue disorder which we will discuss in more detail later this week.
Together, Rare Diseases are not rare. There are about 7,000 different types of rare diseases and disorders, with more being discovered each day. 30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans. 80% of rare diseases are genetic in origin and symptoms may not be evident at birth. Half of rare diseases do not have a disease specific foundation supporting or researching their rare disease.
Common issues faced by the rare disease community include delayed diagnosis, limited access to experienced clinicians and a shortage of research. Research is the theme for 2017. Learn more here: rarediseaseday.org/article/what-is-a-rare-disease
Today, please support all Rare Diseases.
Let the world know that Spinal CSF Leaking is a rare disease and those who are impacted desperately need:
• Increased funding for research
• More timely and accurate diagnosis
• Improved access to apprropriate care
• Refined diagnostic testing and treatments
Watch the video for Rare Disease Day 2017
This evening, be sure to visit us on facebook or Twitter to see photos of buildings shining purple as well as photos from Sunday and Monday.
Pennsylvania Capitol Building – Harrisburg, PA
Rundel Memorial Building – Rochester, NY
Building Owners and Managers Association (BOMA) of Chicago – Chicago, IL
Have your questions ready for our series of 3 LIVE Q & A sessions with experts in the diagnosis and treatment of spinal CSF leak, tomorrow, Thursday and Friday.