Patient Advisory Panel for Research
Just ten days left to apply! Last week, Spinal CSF Leak Foundation opened up applications for our new Patient Advisory Panel for Research. Inclusion of the patient voice in research is crucial, especially in the context of a rare disease, because no stakeholder can...Comments from our most recent symposium: Caregivers
In this video from our most recent symposium, caregivers share their biggest challenges and offer words of advice to those who love and care for people affected by spinal CSF leak. Our next symposium is October 2, 2021, and will be a hybrid event, both in-person and...
Patient Advisory Panel for Research: Patient and Physician Perspectives
Spinal CSF Leak Foundation is launching our Patient Advisory Panel for Research because we believe that inclusion of the patient voice is crucial in moving research forward. As all of our board members, volunteers, and executive director are currently or have been...
Kathy’s Spinal CSF Leak Story
For many people experiencing spinal cerebrospinal fluid (CSF) leak, the most prominent symptom is a headache that worsens when upright and improves when lying down. But some patients never experience this kind of orthostatic headache symptom. Kathy Webster was one of...
#duradash spotlight: Arianna Benedetti
Arianna Benedetti shared her thoughts with us about how she plans to participate in this year’s #duradash. Visit her page to see updates on her progress and give your support! Check out Arianna’s #duradash page here! Arianna, 31, began experiencing...
Patient Stories
