Collaborating to Make Mental Health in Rare Disease Stigma-Free

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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. 

 

 

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

 

 

 

 

 

When 
Mon, Feb 28, 10:00 am to Tue, Mar 01, 11:30 am
Additional Details 

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