Opening Remarks
Dr. Raymond A. Huml, VP, Head Rare Disease Consortium, Syneos Health and Editor & Author, Rare Disease Drug Development: Clinical, Scientific, Patient and Caregiver Perspectives, from Springer Publishing
Review of Day 1
Tara Britt, Founder and President, Rare Disease Innovations Institute (RDII)
Panel Session: Mental Health and Disease Visibility
Moderators:
Dr. Kathleen Bogart, Associate Professor of Psychology, Oregon State University
Keri McDonough, Head of the Patient Voice Consortium, Syneos Health
Patient Panelists:
Joanna Buoniconti, Columnist for the Daily Hampshire Gazette, Freelance Reporter for the Valley Advocate, Editorial Intern for INCLUDAS' Publishing, Blog and Feature Writer for SMILE Mass, and Freelance Writer for Quest Magazine
Melissa Grove, Executive Director of Legacy Cares in Dallas, Texas
Jenn Powell, Director of Community and Patient Engagement - Advocacy & Outreach
Justina Williams, Patient Engagement Coordinator
Panel Session: The Caregiver Perspective
Moderators:
Dr. Kathleen Bogart, Associate Professor of Psychology, Oregon State University
Keri McDonough, Head of the Patient Voice Consortium, Syneos Health
Caregiver Panelists:
Tiffany Cook, MS, CCC-SLP Account Director, InCommon Mother ~ Duchenne Carrier ~ Advocate
Kristen Greene, Managing Counsel in the Office of General Counsel, Syneos Health
Dr. Raymond A. Huml, VP, Head Rare Disease Consortium, Syneos Health and Editor & Author, Rare Disease Drug Development: Clinical, Scientific, Patient and Caregiver Perspectives, from Springer Publishing
Kelly Rouse, Special Programs Director at the YMCA & Owner of private practice serving individuals with developmental disabilities
Monica Summers, Program Director Piedmont Health Services and Sickle Cell Agency
Closing Remarks
Tara Britt, Founder and President, Rare Disease Innovations Institute (RDII)
Dr. Raymond A. Huml, VP, Head Rare Disease Consortium, Syneos Health and Editor & Author, Rare Disease Drug Development: Clinical, Scientific, Patient and Caregiver Perspectives, from Springer Publishing
