Patients and caregivers navigating rare diseases often face emotional strain as significant as the physical symptoms themselves. Despite this, mental health support remains largely absent from the standard of care. This webinar presents new findings from a 2025 survey examining the psychological toll on individuals affected by rare conditions.
A total of 958 respondents participated in this survey, including 78% patients and 22% caregivers. Participants represented diverse demographics: 82% female, 52% aged 35–54 and a broad income range (approximately one-third earning under $50,000 and 28% over $100,000 annually). The majority identified as White (86%), with 5% Black/African American and 5% Other or mixed race.
The featured speaker will discuss survey highlights and why integrating mental health into rare disease care pathways is essential. Attendees will learn about key unmet needs, access barriers and how community-based support can drive resilience. The webinar will also examine the role of advocacy, healthcare and industry in shaping more holistic person-centered models of care.
Register for this webinar to learn how addressing mental health can improve quality of life in the rare disease community.
Speakers
Pam Cusick, Senior Vice President, Rare Patient Voice
Pam Cusick is a leader in patient engagement with more than three decades of experience in research design, implementation and advocacy. As the Senior Vice President of Rare Patient Voice (RPV), she works to ensure that patient and caregiver experiences help shape the future of medical research. With degrees in psychology from Sweet Briar College and the New School for Social Research, Pam bridges the gap between researchers and patients through insight, empathy and collaboration.
Beyond RPV, Pam contributes to advancing women in healthcare through her work with Women in Research (WIRe), the Healthcare Businesswomen’s Association (HBA) and the International Society for Patient Engagement Professionals (ISPEP). She continues to mentor emerging leaders who share her dedication to connecting patient advocacy with meaningful scientific progress.
Message Presenter
Chris Anselmo, Patient
Chris Anselmo is a Connecticut resident living with a rare muscle disease called limb-girdle muscular dystrophy type 2B. He writes about his journey in his newsletter, Hello, Adversity (helloadversity.substack.com), where he shares reflections on cultivating resilience in tough times.
Message PresenterWho Should Attend?
This webinar is suitable for a professional audience as well as for students. Relevant job areas include:
- Clinical Trial Recruitment
- Patient Advocacy
- Patient Engagement
- Patient Recruitment
- Clinical Research
- Research and Development
- Marketing
- Medical Affairs
What You Will Learn
Attendees will gain insights into:
Emotional Health as a Critical Unmet Need
Survey data show that anxiety, stress and isolation are widespread among rare disease patients and caregivers, reinforcing the need to make mental health a core part of support strategies
Gaps in Access to Informed Mental Health Care
Most respondents struggled to find providers familiar with rare diseases, highlighting opportunities to expand access to specialized mental health care
How Community Connection Drives Resilience
Peer networks, advocacy groups and online communities are essential sources of emotional support, with evidence that community-building improves well-being
The Call for Integrated Support Models
Patients and caregivers want healthcare, advocacy and industry to actively support emotional health, signalling the need for holistic care approaches
Xtalks Partner
Rare Patient Voice
At Rare Patient Voice, we connect clients with patients and family caregivers for participation in all types of research studies. With a community of over 185,000 across nine countries and covering 1,500+ conditions, we recruit for studies including market research, health economics and outcomes research, and clinical trials. We partner with advocacy groups, attend patient events, and leverage referrals—ensuring high-quality, engaged respondents. Clients trust us for our precision, dedication, and ability to deliver, no matter how challenging the recruit may be.
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