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Just Don't Sit There - GET INVOLVED


Don't just sit there. Get involved.
Help the Patient Community! Apply to PCORI Advisory Panels
The Patient Centered Outcomes Research Institute (PCORI) has recently approved the formation of an advisory panel on rare diseases and one on clinical trials.  We believe both of these panels would do well to have a voice fromthe epilepsy community, and we encourage you to apply here.

The Epilepsy Foundation was a strong supporter in working toward the creation of PCORI within the Affordable Care Act.   We supported comparative effectiveness research and PCORI in the belief that this research should support patient access and informed health care decision-making while fostering continued medical progress.

Having an open, patient-centered process for setting research goals and allowing patient and provider voices to be heard will ensure that comparative research yields results that are relevant to them. By working on the research questions that matter most to patients and doctors, the institute's work will have the maximum positive effect on improved patient outcomes and health care quality.

PCORI is eager to learn about you, your experience as a patient, caregiver, or member of an advocacy group and your vision for patient engagement in research.  Please take a look at the application page and make sure to apply by January 10, 2014 if you are interested in being a part of either the rare disease or clinical trial advisory panels.The panels are limited to between 10 and 15 members, and a limited number of seats are reserved for patients, caregivers and members of advocacy organizations.

These panels will respectively focus on gearing research and development towards rare diseases and how best to run clinical trials. The following links will give you more information about each of the panels: Clinical Trials and Rare Diseases. Click here for application form:  http://www.pcori.org/get-involved/advisory-panels/advisory-panel-application-process/#apply.

We encourage you to note on your application your connection to the Epilepsy Foundation and any other patient advocacy organizations that you have worked with on research or in a leadership role.  Please feel free to direct any questions about these panels to ksu@efa.org.
 
Thank you,
 
Angela M. Ostrom, Esq.
Vice President Public Policy & Advocacy
Epilepsy Foundation
(301) 918-3766
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