Caregivers are the silent supporters of our healthcare system, often putting their own well-being on hold to provide care for their loved ones. At St. Joe’s, Dr. Danielle Rice is shining a light on the mental health challenges often faced by caregivers and sharing practical advice (and a free caregiver handbook) based on both research and personal victories to support caregiver resilience and skills.   

Dr. Rice will delve into the challenges caregivers face and present effective solutions to support their mental well-being as a keynote speaker of a free webinar on July 18. The webinar is open to the public to attend. 

Standing out in the storm: Caregiving in rare disease 
July 18, 2024, 12:00 PM EST  
Cost: Free  
Hosted by Science  
Registration is open to everyone: click here to register. 

About the webinar 

This webinar aims to provide caregivers with valuable knowledge and strategies to navigate the complexities of caregiving in the context of rare diseases, empowering them to provide effective support while maintaining their own well-being.  

The panel will bring together caregivers, scientists, and policy experts who will share insights and practical advice based on both research and personal victories. Attendees will gain a deeper understanding of the challenges faced by caregivers and learn practical strategies to enhance their caregiving skills and resilience.  

In this webinar, participants will:  

• Explore the unique challenges of caregiving in rare disease  
• Learn practical caregiving strategies and how to access resources  
• Hear about approaches that work to foster resilience and self-care among caregivers. 

 About Dr. Danielle Rice  

Dr. Danielle Rice (she/her) is a clinical and health psychologist at St. Joeseph’s Healthcare Hamilton. She is a full-time assistant professor in the Department of Psychiatry and Behavioural Neurosciences at McMaster University. Her research centers on supporting the mental health of caregivers to those with rare diseases—specifically caregivers to those with scleroderma, a rare, chronic autoimmune disorder. She is the chair of a local rare disease organization, the Hamilton Scleroderma Group, which aims to (1) foster clinical collegiality, (2) provide patient and caregiver education, and (3) engage in research. Dr. Rice has dedicated her research and professional career to improving the lives of caregivers through innovative and practical strategies, and personal lived experiences. 

“As someone who experienced burnout, I can say with conviction that if resources like this were available to me over a decade ago, I would have been kinder to myself and the people around me. I would have followed Dr. Rice’s strategy of “coping ahead” and practicing “self-compassion.” And, I likely could have prevented a few pitfalls.”
(Roberta Natale, sister of a patient living with a rare disease) 

“The need to be a caregiver can happen unexpectedly. Dr. Rice commonly speaks about how to navigate this time while highlighting the need to prioritize your own health and well-being as a support person, and noticing the positive moments that can come from this experience.” 
(Aaron Gartner, partner of a person diagnosed with a rare disease during pregnancy at St. Joseph’s Healthcare Hamilton) 

“At St. Joe’s, family and caregivers are a key partner for us in supporting a patient in their recovery journey.  We know that when patients have strong support systems, they have better outcomes. Thus, it is important for us to ensure that those supporting patients have their own support too, for navigating challenges and assisting their loved one on a care journey while also maintaining their own health and wellness.”
(Randi McCabe, Interim Vice President, Mental Health and Addictions, St. Joseph’s Healthcare Hamilton)