This interview features Cristol Barrett O’Loughlin, Founder & CEO, Raregivers, as she shares her personal journey and the emotional challenges faced by caregivers in the rare disease community. Having lost three brothers to Hunter syndrome, Crystal turned grief into a global movement supporting families and professionals.

Shahid Akhter, Editor, Healthyouonline, spoke to Cristol Barrett O’Loughlin, Founder & CEO, Raregivers, to explore the emotional challenges faced by caregivers in the rare disease community and the global efforts to support their well-being. Cristol Barrett O'Loughlin

Rare Diseases: Caregiver's Challenges

There are so many harsh realities in rare disease. It often takes between 3 to 7 years to receive an accurate diagnosis. It can be stress-inducing. All of those doctor's appointments. The stress of getting yourself out of the house with the family, with multiple children, or the stresses of home and work life. Worrying about what the outcome could be. Worrying about what you thought life could look like. These are all very normal feelings.

It's very natural for caregivers to focus all of their energy on their loved one. In the process of doing that, we become depleted. It's important that you focus on your emotions, your own emotional health, and well-being. Whether you're in an early diagnostic phase or you're in the realities of full-time care, you're fearful of an end-of-life experience regardless of where you are in the process. With rare disease we want you to know that your feelings matter too. And then the way to sustain yourself in this experience is to tend to your emotional well-being.

Raregivers : The Beginnings

My name is Crystal Barrett O'Laughlin, and I'm the founder and CEO of Raregivers. 

Like so many of us in Rare Disease, it's a personal passion that fuels the work that we do. I lost three of my four older brothers to Hunter syndrome back in the 1980s. David, Jared, and Randy were 12, 18, and 19 when they passed away. So I witnessed firsthand the stress of caregiving in the family that became the foundation. That lived experience is why we launched Raregivers in the year 2000. For 24 years, we've been focusing on the emotional well-being of caregivers, patients, and professionals in the rare disease space.

Raregivers: Activity, Growth & Support

Raregivers is a coalition. We represent 167 patient advocacy organizations, pharmaceutical companies, volunteer pediatricians, psychologists, and other mental health and wellness experts.

We defined six stages of the rare giver's emotional journey map, and the journey map is what we use within our support groups and with our transformative wellness retreats and all of our psychological training in the health care professional environment. We operate across 33 countries. We've grown from seven women in our living room to over 22,000 families, and it's our stated intent to support 3.5 million rare givers by 2026.

We have three pillars of support that we provide through prayer givers. The first is global awareness, and our hashtag #givers100 campaign was launched at Microsoft in 2024. We're using artificial intelligence to identify the most influential people on the planet. And rare diseases. So if you're an athlete, you're a musician. You're a rare mother or rare father with a big digital footprint.

We invite you to nominate yourself and join us as we amplify the needs for emotional well-being in the rare disease space. Our second pillar is all-around patient and caregiver support. So we run weekly support groups and quarterly wellness retreats where we actually fly people into a location and spend 2 to 3 days connecting with each other using equine therapy and music therapy and going through our ethics-backed research.

Reviewed Rare Givers' emotional journey methodology. And then our third pillar is actually educating the health care professionals. So we go into the rare disease centers of excellence around the world. And we work with genetic counselors, with pediatricians, with ICU nurses, and with anyone that's holding emotional space for the family. We work with them using the Raregivers emotional journey map as a way to just orient your feelings in this very, extremely challenging environment called rare disease.

To all the rare mothers and rare fathers. To all the siblings and the caregivers in the family. We want you to know that you're not alone. We are a mighty powerful voice in rare disease. And it's so important that you're expressing your feelings about the experience along the way.

Raregivers: Collaboration in India

India is a key growth market for us. India is one of the largest countries on the planet. It's critically important that we have partnerships like India-US RARE, Tamar Trust, Eurydice Nord Global Genes, and Rare Disease International. We're working together as umbrella organizations to bring together patients, caregivers that love and support them, and the health care professionals in their ecosystem of support.