The Critical Need to Address Mental Health in the Rare Disease Community, Upcoming Webinar Hosted by Xtalks

In this free webinar, learn how addressing mental health can improve quality of life in the rare disease community. Attendees will gain insight into survey data showing 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. Featured speaker Pam Cusick of Rare Patient Voice will discuss why most respondents struggled to find providers familiar with rare diseases, highlighting opportunities to expand access to specialized mental health care. She will be joined by Chris Anselmo, who lives with the rare muscle disease limb-girdle muscular dystrophy type 2Ba rare muscle and will share his perspectives on rare disease and mental health. They will discuss why peer networks, advocacy groups and online communities are essential sources of emotional support, with evidence that community-building improves well-being. Attendees will gain insights into the need for holistic care approaches, as patients and caregivers want healthcare, advocacy and industry to actively support emotional health.

TORONTO, Nov. 20, 2025 /PRNewswire/ -- 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.

Rare Patient Voice Senior Vice President Pam Cusick will discuss survey highlights and why integrating mental health into rare disease care pathways is essential. She will be joined by Chris Anselmo, a Connecticut-based writer living with limb-girdle muscular dystrophy type 2B who details his life with a rare disease in his newsletter, Hello, Adversity, and upcoming book. 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.

Join Pam Cusick, Senior Vice President, Rare Patient Voice, and rare disease patient advocate and writer Chris Anselmo for the live webinar on Thursday, December 11, 2025, at 12pm EST (6pm CET/EU-Central).

For more information, or to register for this event, visit The Critical Need to Address Mental Health in the Rare Disease Community.

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