In the United States, three hundred and fifty people seek mental health care for every one licensed professional available to provide it. 

For rare disease caregivers – those supporting loved ones with conditions affecting fewer than 200,000 people – this gap represents an incredible challenge that compounds an already overwhelming burden. When they need mental health support the most, qualified providers remain scarce or, in some cases, nonexistent. 

“This gap increases dramatically if you are in rural areas or are looking for a clinician who understands your lived experience,” says Julie Wells, Director of Strategic Relationships at Give an Hour, a national organization dedicated to transforming mental health by building strong, resilient individuals and communities. 

The numbers paint a disturbing picture. Studies show that rare disease caregivers experience higher rates of depression, anxiety, and burnout compared to healthy individuals and those in other caregiving roles. But why is this? 

“Caregivers experience immense joy but also profound challenges that impact mental and physical challenges,” Wells explains. “These unpaid caregivers juggle complex medical systems, provide constant care, and bear the emotional burden of managing rare, often misunderstood conditions. Support systems tailored to their unique needs remain inadequate.” 

A study from Pelentsov et. al (2015) also found that rare disease caregivers are often physically affected as well, with the most common impacts being sleep disturbances, fatigue, headaches, frequent colds, and appetite loss. 

But while caregiving can feel isolating and sometimes overwhelming, Give an Hour offers free mental health support for anyone in need. In her interview with Rareatives, Julie Wells dives deeper into how Give an Hour came to be, the impact of caregiver mental health on the entire family, and how Give an Hour overcomes traditional barriers to mental health care. 

An Interview with Julie Wells: Addressing the Unique Challenges of Rare Disease Care

Jessica Lynn (JL): Julie, thank you so much for sitting down with us today. Before we dive in, could you tell me a little more about yourself and your background?

Julie Wells: I serve as the Director of Strategic Relationships at Give an Hour, where I champion support for rare caregivers and fosters healing through peer support initiatives. With over 30 years of nonprofit experience, I have led transformative programs for vulnerable populations, founded the UNITY Fellowship to empower underrepresented nonprofit leaders, and spearheaded successful organizational mergers. Outside of my impactful work, I enjoy the tranquility of North Carolina’s mountains with my family.

How did Give an Hour come to be? What is the organization’s main mission?

Give an Hour was founded in 2005 with the vision of creating a society where every individual has the knowledge, resources, and opportunities to take charge of their mental health journey. The organization is dedicated to promoting self-awareness, self-care, and self-advocacy, empowering individuals to make informed decisions and actively participate in their well-being.

Initially focused on addressing the mental health needs of those impacted by post-9/11 trauma, Give an Hour has expanded its reach to provide support for individuals and communities affected by human-made trauma. Through innovative, scalable programs, we work to close the gaps in mental health care access and delivery, ensuring that everyone has the opportunity to live a fulfilling and mentally healthy life. 

At the heart of our mission is the commitment to building resilience – both in individuals and the communities they call home. We offer responsive and tailored mental health programs designed to empower people to take control of their mental health journey, fostering long-term strength and healing. With a focus on addressing barriers and gaps in mental health care, Give an Hour continues to grow its social impact, working toward a world where mental health resources and support are accessible to all.  

In the last three years, I’m thrilled to share that Give an Hour has reached 18,280 rare caregivers through workshops, peer support groups, educational resources, and/or 1:1 mental health counseling. 

How does Give an Hour identify and recruit mental health professionals and resources to serve the rare disease community?

Give an Hour identifies and recruits mental health professionals and resources to service the rare disease community through a multi-faceted and intentional approach. At the heart of our efforts lies a commitment to understanding the unique challenges faced by rare caregivers.  Through grant-funded initiatives, such as the Rare Belonging Grant from the Alexion Charitable Foundation, Give an Hour has mapped the mental health journeys of rare caregivers, uncovering their specific emotional and practical needs. This research has informed targeted outreach to mental health providers who are trained to deliver trauma-informed care tailored to the rare disease community.

Give an Hour also collaborates closely with trusted rare disease organizations and advocacy groups, leveraging partnerships to recruit professionals who are passionate about supporting rare caregivers. These partnerships help ensure that the mental health resources provided are not only accessible but also attuned to the realities of caregiving in the rare disease space. 

Additionally, Give an Hour creates a sustainable support system by empowering caregivers to take part in their own mental health journey. Rare caregivers can join peer support groups, which are led by trained facilitators with lived experience, or even train to become facilitators themselves when they are ready to give back. This community-driven model, combined with traditional mental health care and digestible educational resources, ensures that caregivers have access to both professional guidance and peer-based support. By combining provider training, community partnerships, and caregiver-led initiatives, Give an Hour has built a robust system to address the mental health and well-being of the rare disease community.  

How long can caregivers typically access your services? Are there any limitations on who can access your services?

Caregivers of any rare disease can reach out for support at any time, accessing our tools that have been customized for their experiences. In addition, we have yearly peer support training for those supporting others in the rare community, and this training is both open and free to the public. Access to clinical care is managed on a case-by-case basis and we have ongoing opportunities to help patient advocacy groups up-skill or start their own peer support groups.

How does the long-term, progressive nature of many rare diseases impact the mental health trajectory of family caregivers? In your experience, what are the most significant differences between short-term crisis caregiving and long-term progressive disease caregiving (in terms of mental health impact)? 

In both joyful and challenging ways. There are many amazing gifts that rare diseases bring to families. The rare journey can bring immense learning and joy, often opening families to communities of individuals they may have never been engaged with outside of the rare space. One of the most important ways that we can support rare caregivers is by helping them see themselves as parents, children, and loved ones rather than their roles being so unique and different from more typical life experiences. A short-term caregiving experience requires shifts in roles and often additional financial, physical, and emotional challenges that will pass with time. For life-long caregivers, they really must accept their role as part of their identity—but not their entire identity—to sustain a healthy well-being.

Many rare disease caregivers I’ve spoken to report feeling isolated. How does Give an Hour address this isolation? What specific support mechanisms have been most effective?

Connecting to patient advocacy groups that are specific to the rare disease and more global networks, such as the National Organization for Rare Disorders (NORD) and Global Genes, offers patients and caregivers a greater relationship with people living with similar diagnoses around the world. Rare disease specific groups often emerge to build community and share resources. However, mental health needs become a persistent challenge. Give an Hour supports patient advocacy groups by upskilling their staff and volunteers on basic mental health and how to have supportive conversations while protecting from compassion fatigue and burnout. 

What role does preventive mental health care play in your support model, and how do you help caregivers recognize early signs of burnout or compassion fatigue?

Give an Hour knows that empowering individuals to understand mental health not only increases their own well-being but enables them to support the mental health of others as well. Normalizing conversations about how you feel and building in time that brings joy into your schedule are tools that everyone can use. With compassion fatigue and burnout, the symptoms can show up in ways you don’t expect such as diminished joy in work/life, boredom, feeling unappreciated or less productive and difficulty in setting boundaries.

Could you discuss the effects of caregiver mental health on the entire family? How does Give an Hour help caregivers maintain their relationships while managing their caregiving responsibilities?

Couples who are caregiving together have a unique set of challenges. How they respond to stress, uncertainty and difficult changes to treatment or health can all be impacted by the previous traumas they have experienced, making it difficult to integrate different reactions to the same information. There is also an impact on siblings who, often by necessity, must adjust their needs to the needs of the person with the disease. Caregivers may often try to shield other family members or normalize routine hospital visits, but these are not typical experiences. Siblings often share that even when their families are not communicating openly about everything that is happening, they are aware of the stress and the fear that comes with rare caregiving.

What are the biggest barriers you’ve observed preventing caregivers from seeking mental health support, and how does Give an Hour work to overcome these obstacles?

The gap in mental health professional availability increases dramatically if you are in rural areas or are looking for a clinician who understands your lived experience. When clinician numbers are particularly low, because of location or the need to find care that understands issues around race, gender and equity, we work with the members of that community to determine which organizations exist that are providing care and find ways to amplify their impact.

Within our network of 3,500 clinicians, we offer free training to upskill providers on how to best serve the rare community while also buffering the difficulty in finding care by lifting alternative forms of support, such as connecting with a trained peer who knows how to have mental health conversations while also encouraging wellness plans.

Can you share specific examples of how caregivers have successfully integrated mental health support into their already demanding schedules? What makes these approaches sustainable?

We work with many organizations and hear stories all the time of adaptive techniques caregivers use to get their needs met. One father described how much he loved his network of friends. But whenever they asked him to do something, he was bound by his son’s schedule and needs. Eventually, he told his friends that he did value time with them but was only available from 3-4:30 p.m. and Saturdays and if there was anything he could participate in during that time, he would love to join. His friends responded by planning Saturday afternoon events instead of weekday or Friday evening gatherings. The caregiver was able to ask for what he needed and his community gave him the right kind of support.

What role do you see peer support playing in caregiver mental health, and how can organizations like Give an Hour help facilitate these connections across different disease communities?

Peer support is not a new concept. People have been leaning into community informally for most of history, usually to offset systems that don’t work for them. Peer support as a model is incredibly effective but it is important to make sure that those providing support have training to respond to crises and their own backup to ensure that their mental health is also being addressed. Give an Hour’s approach starts with core beliefs around the skills people benefit from and then we customize based on population needs. We work with organizations of all sizes, helping communities create the solutions they need. 

How does Give an Hour help caregivers develop emotional resilience and coping strategies for the unpredictable nature of progressive diseases?

The rare journey is complex. It can derail individuals from their vision of how their lives and their families will function. We connect the community, who all have unique experiences, and lift individuals as experts of their lives. Normalizing feelings of anger, sadness and disconnection help caregivers have conversations about how they recover from those moments of increased hopelessness. We also help caregivers create crisis plans and recognize gaps in the circles of support to help build their structural foundation of support.

At Give an Hour, we recognize the unpredictability of rare disease and its impact on your life. If you need support, please reach out. You are not alone in this journey. 

About Give an Hour

Give an Hour is a national organization dedicated to transforming mental health by building strong, resilient individuals and communities. Through responsive and innovative programs, Give an Hour closes gaps in mental health care access and empowers people to actively take part in their mental health journey. The organization envisions a society where everyone has the knowledge, resources, and opportunities to live a mentally healthy, fulfilling, and meaningful life. To learn more about Give an Hour, visit GiveAnHour.org and follow them on social media @giveanhour. Be sure to sign-up for their newsletter on the website to stay updated on their impactful work and discover how you can get involved.