Patient Representative

Since 2014, I have served as Patient Representative for the Center for Drug Evaluation Research and, as of 2022, the Center for Devices and Radiological Health at the U.S. Food and Drug Administration.  I represent a variety of patient communities related to chronic pain, including migraines, fibromyalgia, myofascial pain syndrome, neuralgia, and arthritis as well as the use of devices. As a patient representative, I have served in the following ways:

 

2023

  • Patient Engagement Advisory Committee Member (4 year appointment), Center for Devices and Radiological Health (CDRH)
  • Anesthetic and Analgesic Drug Products Advisory Committee Meeting, Voting Member

  • Dermatologic and Ophthalmic Drugs Advisory Committee Meeting, Voting Member

 

2022

  • Clinical Chemistry and Clinical Toxicology Devices Panel of the Medical Devices Advisory Committee Meeting, Non-Voting Member. Oct 20, 2022

  • Review Panel Member for Office of Orphan Product’s Rare Diseases Natural History Grants Program

  • RetreatMigraine– Coalition for Headache and Migraine Patients Conference Attendee

 

2018-2022

  • Patient Engagement Collaborative, a joint effort of Clinical Trials Transformation Initiative (CTTI) and the U.S. Food and Drug Administration; tasked with increasing patient engagement in medical product development and FDA processes (4 year appointment)

 

2019

  • Review Panel for Office of Orphan Product’s Rare Diseases Natural History Grants Program

2018

  • Psychopharmacologic Drugs/ Drug Safety and Risk Management Advisory Committee Meeting, Voting Member

  • Anesthetic and Analgesic Drug Products & Drug Safety and Risk Management Advisory Committee Meeting, Voting Member 

  • Risk Communication Advisory Committee Meeting on the Pregnancy and Lactation Labeling Rule

2017

  • Anesthetic and Analgesic Drug Products & Drug Safety and Risk Management Advisory Committee Meeting, Voting Member 
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  • Taught session entitled “Understanding Basic Biostatistics” at Patient Representative Workshop, Bethesda, MD

  • Review Panel Member Office of Orphan Product’s Rare Diseases Natural History Grants Program

2016

  • Taught session entitled “Understanding Basic Biostatistics” at Patient Representative Workshop, Bethesda, MD

  • Nonprescription Drugs Advisory Committee Meeting, Voting Member

2015

  • Submitted written comments on National Pain Strategy Draft

2014

  • Submitted written comments on “Migraine: Developing Drugs for Acute Treatment,” Draft Guidance for Industry

  • Attended Patient Representative Workshop, College Park, MD

  • Attended and made comments at Fibromyalgia Public Meeting on Patient-Focused Drug Development

 

I also maintain active memberships in the following groups:

    • Migraine Research Foundation

    • Coalition for Headache and Migraine Patients (CHAMP)

    • National Fibromyalgia and Chronic Pain Association (NFMCPA)

    • National Fibromyalgia Partnership

    • American Chronic Pain Association
    • Migraine Meanderings
    • American Sociological Association’s Disabilities and Society and Medical Sociology sections

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