Caregivers of individuals with rare diseases often face significant emotional and mental health challenges, yet access to specialized mental health support remains scarce. In a recent feature with Rareatives, Give an Hour’s Director of Strategic Relationships, Julie Wells, shared her expertise on the struggles these caregivers encounter and how Give an Hour is working to bridge the mental health care gap.
For every one licensed mental health professional in the U.S., there are 350 individuals seeking care. For rare disease caregivers—who support loved ones with conditions affecting fewer than 200,000 people—this disparity creates immense hardship. These caregivers are often overwhelmed, balancing complex medical systems, continuous care responsibilities, and emotional burdens with limited access to tailored mental health resources.
“This gap increases dramatically if you are in rural areas or are looking for a clinician who understands your lived experience,” says Julie Wells. Her expertise in nonprofit leadership and mental health advocacy has been instrumental in shaping Give an Hour’s approach to supporting these caregivers.
Give an Hour’s Commitment to Rare Caregivers
Recognizing the unique struggles of rare disease caregivers, Give an Hour provides free mental health resources, peer support groups, and educational tools designed to empower caregivers in their mental health journeys. Through partnerships with organizations like the Alexion Charitable Foundation and patient advocacy groups, Give an Hour recruits and trains mental health professionals to better serve this community.
A key component of their work is peer support—helping caregivers connect with others who understand their experiences. “Rare caregivers can join peer support groups led by trained facilitators or even train to become facilitators themselves when they are ready to give back,” Wells explains. This community-driven model ensures long-term resilience and emotional well-being.
With over 30 years in nonprofit leadership, Julie Wells has dedicated her career to developing transformative programs for vulnerable populations. Under her guidance, Give an Hour has reached over 18,000 rare disease caregivers in the past three years, offering them critical mental health resources.
Her passion for strengthening mental health care access is evident in Give an Hour’s tailored programs, which aim to reduce isolation, prevent burnout, and build emotional resilience among caregivers. “One of the most important ways we can support rare caregivers is by helping them see themselves as parents, children, and loved ones first—not solely defined by their caregiving role,” says Wells.
Give an Hour continues to lead the way in addressing the mental health needs of rare disease caregivers. With the support of Amgen, Give an Hour is leading a group of 8-13 rare disease patient advocacy organizations to offer educational programs of merit. These programs enhance their capacity to address mental health and well-being within their communities & will provide tailored nonclinical and clinical mental health support designed to meet the unique needs of organizational leaders navigating complex roles as patients, caregivers, parents, and advocates.
If you or someone you know is struggling, visit GiveAnHour.org to access free mental health support and learn more about their impactful work.
