Patient Advisory Panel for Research

Our 2023-2025 Panelists

About the Panel

As a patient-founded and patient-led organization, our Foundation has been a driving force in the intracranial hypotension research community. From its inception by our patient-physician co-founder, Dr. Connie Deline, the Foundation has emphasized the spirit of collaboration as critical to our mission. From bringing clinicians, researchers, and patients together at conferences, to the successful implementation of specific ICD-10 codes, to funding research, starting and supporting guidelines, and forming a research network. A patient advisory panel for research is an effective means to formalize the vital role of patients in moving research forward.

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 the patient searching for cures. And no one other than the patient can better report the patient experience. Having patients and caregivers engaged in setting research priorities, ensuring the relevance of studies, choosing outcomes that matter to patients, developing study design, providing insights on recruitment of study participants, and translating results ensure that the patient experience is a central component of our research initiatives.

Role Description

For information about the skills and experience needed to be a patient panelist, the roles and requirements, please see our role description.

* Note: applications are now closed.

Role Overview

Here is an overview of what’s involved in being on our Patient Advisory Panel for Research, in PDF form and also in this short video: