OUR PURPOSE

Raregivers 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 these raregivers 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 the Rare Family, Cristol started a nonprofit organization to change that.

Raregivers, formally known as ANGEL AID (A Nonprofit Group Enriching Lives), was originally formed to raise funds for the National MPS Society (www.mpssociety.org) 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 for funding significant MPS research grants. This same year Dr. Emil Kakkis and BioMarin received FDA-approval for Aldurazyme, the first treatment for MPS disease.

For the next two decades, Cristol continued to host fundraisers 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. In 2018, ANGEL AID was incorporated as a 501(c)3 organization and re-launched with the purposes to source research, relief and inspiration for families of children with rare diseases.

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.” 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 18,956+ Raregivers™ around the world. Participants in this workshop will increase awareness of their mental health and emotional wellbeing needs, regardless of where they are in the journey of a “medicalized life.”

Watch Cristol’s TEDx:

“Caring for the Caregivers: 3 Tools for Self-Care”. To book Cristol for speaking opportunities email media@raregivers.global.