News from NORD

NORD Publishes Report on Spontaneous Intracranial Hypotension (SIH)


As part of its ongoing educational outreach, NORD has published a report on spontaneous intracranial hypotension (SIH) in its Rare Disease Database. The database covers approximately 1,300 rare diseases and is available to all on the NORD website. Reports may be read online or downloaded free of charge.

The report on SIH was developed in collaboration with Connie Deline, MD, co-founder of the Spinal CSF Leak Foundation, and Wouter I. Schievink, MD, Professor of Neurosurgery, Department of Neurosurgery, Cedars-Sinai Medical Center. The hope is that the new report will reduce diagnosis delay and also be helpful to newly diagnosed patients.

The new report may be accessed here . SIH is secondary to a cerebrospinal fluid leak at the level of the spine, and the resulting loss of CSF volume to support the brain and spinal cord. To promote awareness of the condition, February 26 to March 4 has been designated the first spinal CSF leak awareness week.

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