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 have the constant and relentless drive of a patient searching for a cure—and no one other than the patient can better report on the patient experience.
We want to center the patient voice because the patient voice matters. We are particularly looking to amplify the voices of those who are marginalized or whose experience is overlooked due to their race, gender identity, or other factors.
Having patients and caregivers engaged in setting research priorities, ensuring relevance of studies, choosing outcomes that matter to patients, developing study design, providing insights on recruitment of study participants, and translating results into action ensures that the patient experience is always central to our research agenda.
For information about the skills and experience needed to be a patient panelist, the roles and requirements, please see our role description.
Additionally, you can watch this short overview about the panel: