Nonprofits RARE Science and Fresh Start Surgical Gifts aim to raise awareness for children’s rare disease through RARE Bear Program

Rare Bear
A child with his new friend, a special RARE Bear. Courtesy

RARE Science, an all-volunteer Encinitas-based nonprofit dedicated to accelerating diagnosis and therapeutic development for kids with rare disease, recently gifted 200 RARE Bears to local nonprofit Fresh Start Surgical Gifts through its RARE Bear Program created to raise awareness for children’s rare disease. Fresh Start provides free-of-cost reconstructive surgery for kids with physical deformities and treats rare conditions, including Apert syndrome and venous malformations (VM).

RARE Science launched in 2015 and shortly after introduced the RARE Bear Program, a community-driven initiative, to raise awareness and unite affected families by gifting teddy bears, also known as RARE Bears, to children with rare disease. The RARE Bears are symbolic of the program’s mission in spreading awareness and providing a close-knit community and resource for families living with rare disease. Over 5,000 volunteer sewists from 15 different countries, referred to as the RARE Bear Army, create one-of-a-kind RARE Bears for one-of-a-kind “rare” kids out of remnant fabric so each bear is uniquely different, just like each child in the RARE Bear Program. The unstuffed RARE Bears, “bear skins,” are sent back to San Diego for community groups, including Girl Scouts San Diego and YMCA, and to life science companies such as Thermo Fisher, to take part in stuffing and sewing the RARE Bears so they can be gifted to a child affected by rare disease.

“We were very excited to find a like-minded partner, Fresh Start, in our community as our collaborative and tenacious desire to help kids live life to its fullest in health and prosperity is the same,” said RARE Science CEO Christina Waters. “By working together and staying united, we can change the lives of kids not only in our community but across the globe.”

Fresh Start transforms the lives of disadvantaged infants, children and teens with physical deformities caused by birth, accidents, abuse or disease through the gift of reconstructive surgery and related healthcare services. In collaboration with RARE Science and the RARE Bear Program, Fresh Start aims to help educate community members about rare diseases and conditions that cause physical deformities among children.

“We are grateful for the opportunity to help change the lives of children and families affected by physical deformities and other rare conditions,” said Fresh Start CEO Shari Brasher. “Together with RARE Science, we are helping to instill confidence in young children and unite families who may have once felt alone.”

RARE Science works directly with patient families and foundations across the globe. The organization is currently in over 50 countries representing over 1,000 rare diseases. RARE Science is dedicated to uniting families with the same diseases and studying the biology for discovering therapies for 8,000 known rare disease that affect approximately 250 million kids worldwide.

The RARE Bear Program is currently seeking volunteers, including: quilters, stuffers, donations of fabric and other materials, as well as corporate partnerships.

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