Rare Disease Day 2022
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Syneos Health® Recognizes Rare Disease Day 2022 with a Series of Virtual Workshops Focused on the Intersection of Mental Health and Rare Disease
Life with a rare disease can have infinite milestones, setbacks, traumas and triumphs—all likely to be interlaced with a variety of factors that can influence mental health and quality of life.
In fact, psychological symptoms are estimated to affect 75% of rare disease patients. Whether the cause is from the physical disease or dynamics surrounding it, it is time to remove the stigma around talking about mental health, understand the unique challenges of this community, and drive support and solutions to address them.
This Rare Disease Day, Syneos Health is partnering with the Rare Disease Innovations Institute (RDII) to bring you a patient-powered program focused on the intersection of mental health and rare disease
Through a series of presentations by experts and advocates in the field—and panel discussions with patients and caregivers—this event will share experiences, perspectives, guidance and resources around the key mental health considerations related to living with a rare disease, and what can be done to address them.
Key Takeaways
- Understand the impact of mental health in the rare disease community, from both a medical and psychological standpoint.
- Explore the mental health implications in rare disease based on stage of life at diagnosis, and on visibility of the disease – from the patient and caregiver perspective.
- Learn some of the mental health challenges that patients with rare disease face, direct from the patients themselves
- Identify helpful, appropriate resources that address mental health needs specifically in rare disease.
On-Demand Virtual Evemt
Opening 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
A Patient and Patient-Advocate Perspective
Meredith L. Huml, Chapter Director, North Carolina Chapter of the FSHD Society
Keynote: Physician Overview of Mental Health in the Rare Disease Community
Dr. Michelle Bailey, Senior Medical Director, Syneos Health
Keynote: Psychological Overview of Mental Health in the Rare Disease Community
Dr. Kathleen Bogart, Associate Professor of Psychology, Oregon State University
Panel Session: Mental Health and Age of Onset/Diagnosis in Rare Disease
Moderators:
Dr. Kathleen Bogart, Associate Professor of Psychology, Oregon State University
Keri McDonough, CP, Head of the Patient Voice Consortium, Syneos Health
Patient Panelists:
Kate Bardwell, Principal, SSU Legal Contract Management Global Site Contracts Service Centre
Meredith L. Huml, Chapter Director for the North Carolina Chapter of the FSHD Society
Dr. Chloe Labetoulle, Regulatory Affairs - CMC Global Regulatory Affairs Solutions (GRAS) at Syneos Health
Hawken Miller, Features Writer and Columnist, BioNews
Kevin Schaefer, Associate Director of Community Content, BioNews Inc
Jessica Valence, VP Team Operations, GRYT Health
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
On-Demand Virtual Event
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, CP, 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, CP, 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 at 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
