Rare Disease Day 2022

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 

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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.

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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

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