March 2, 2022
Content 

 

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

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