We have recently joined NORD, the National Organization for Rare Disorders.
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 230 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
A disease or disorder is defined as rare in the US when it affects fewer than 200,000 Americans at any given time.
Spontaneous spinal CSF leaks are considered rare in the USA with an estimated incidence of 1 in 20,000 per year.
Iatrogenic spinal CSF leaks are more common than spontaneous ones but the prevalence has not been well-studied.
Partnering with NORD will help us to advance our own mission, which is to improve the quality of life of those affected by spinal CSF leaks through education, research and community support. We will be able to expand our reach in raising awareness, in education of both health care professionals and the lay public, as well as to facilitate research efforts.
You can learn more about NORD on their website, rarediseases.org