Collaborating to Make Mental Health in Rare Disease Stigma-Free
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Jump to the Agenda for Each Day: Monday, February 28 | Tuesday, March 1
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.
Monday, February 28 | 10-11:30am EST
All times are listed in EST
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. Katheen Bogart, Associate Professor of Psychology, Oregon State University
Panel Session: Mental Health and Age of Onset/Diagnosis in Rare Disease
Moderators:
Dr. Kathleen Bogart
Keri McDonough, CP, Head of the Patient Voice Consortium, Syneos Health
Patient Panelists:
Kate Bardwell
Meredith L. Huml
Dr. Chloe Labetoulle
Hawken Miller
Kevin Schaefer
Closing Remarks
Tara Britt
Dr. Raymond A. Huml
Tuesday, March 1 | 10-11:30am EST
Opening Remarks
Dr. Raymond A. Huml
Review of Day 1
Tara Britt
Panel Session: Mental Health and Disease Visibility
Moderators:
Dr. Kathleen Bogart
Keri McDonough
Patient Panelists:
Joanna Buoniconti
Melissa Grove
Panel Session: The Caregiver Perspective
Moderators:
Dr. Kathleen Bogart
Keri McDonough
Caregiver Panelists:
Tiffany Cook
Kristen Greene
Dr. Raymond A. Huml
Kelly Rouse
Closing Remarks
Tara Britt
Dr. Raymond A. Huml