Raregivers Inc was inspired by the passion of our founder, Cristol Barrett O’Loughlin, and the Barrett family experience. As a young girl, Cristol’s family spent decades living with the diagnosis and ultimate demise of her three older brothers. Randy, David and Jared passed away at 12, 18, and 19 from the rare genetic disease Mucopolysaccharidosis (MPSII), also known as Hunters Syndrome.

The emotional, physical and mental toll was felt most acutely by her mother, Phyllis, and her father, Richard. Yet the Barrett family had no access to vital services that could have helped them through their journey. Recognizing the complete lack of mental health and wellness services for families dealing with the unimaginable realities of palliative caregiving, Cristol started a nonprofit organization to change the system of support for the 2.8 billion caregivers, patients and professionals serving them. Women serve as the primary caregiver in 82% of rare families, so Cristol and the team started with just seven Rare Mothers™ in the living room of Barrett Family Ranch.

Raregivers, formally known as ANGEL AID (A Nonprofit Group Enriching Lives), was originally formed to raise funds for Hunter Syndrome in the hopes of finding a cure for MPS disease. This was in the mid 1990s and Cristol was joined by her sorority sisters, Pi Beta Phis from UCLA, to host a series of fundraisers. In 2003, ANGEL AID was awarded Partner of the Year by the National MPS Society for funding significant MPS research grants, including the father of enzyme-replacement therapy, Dr. Emil Kakkis, who eventually received an FDA-approval for Aldurazyme, the first treatment for MPS disease.

For the next two decades, Cristol continued to host fundraisers (while working at IBM) as the rare disease community strengthened and organized, in large part through organizations like the National Organization for Rare Disorders (NORD), Global Genes and EURODIS / Rare Disease International.

In 2018, ANGEL AID was incorporated as a 501(c)3 organization and re-launched with the purpose to create emotional systems of support for rare, chronic and complex disease communities. Cristol established the Raregivers™ Coalition to create research-backed methodology with mobile-first, multilingual relief around the world. Today the organization support over 565,000 families across 38 countries.

The organization formally rebranded to Raregivers™ in 2024.

Raregivers™ provides emotional relief services for a globally connected network of caregivers, patients and professionals. “A rare, chronic or complex disease diagnosis brings isolation, medical uncertainty, stressors on home/work life. COVID increased the needs of these vulnerable communities,” says Founder & Co-CEO, Cristol Barrett O’Loughlin. “Our Raregivers™ Emotional Journey Map delivers lasting relief.”

Participants in Empowering Raregivers™ workshops and support groups will increase awareness of their mental health and emotional wellbeing needs, regardless of where they are in the journey of a “medicalized life.” The Raregivers Emotional Journey Methodology is available free, downloadable and practitioners can train to earn a certificate to bring this philosophy to your communities.

Graduating just seven Rare Mothers in 2019 from the Raregivers™ Emotional Relief program @ Barrett Family Ranch in Orange, CA - our global network has grown to 565,000+ Raregivers™ around the world. Raregivers has delivered 1.5 million hours of emotional support. Our goal is to support 3.5 million by 2026.

Please consider supporting our work. Email info@raregivers.global to establish a strategic partnership.

Do you love Hollywood endings?

Watch the re-marriage of Richard & Phyllis Barrett (1963 & 2023):

“Grin ‘N Barrett: A Rare Family Love Story”