RARE Bear Program
RARE Science has initiated the RARE Bear program, a grassroots community-driven outreach for kids with rare disease. Community volunteers create one-of-a-kind teddy bears for one-of-a-kind “rare” kids like Lilly. On the evening of August 13th, 2015 Lilly was gifted the first RARE Bear, kicking off a mission to change the future for kids with rare disease. Lilly posted on her Instagram later that night,
“Honored to be the first rare disease patient to receive a RARE Bear from RARE Science! Quilters all over the world make these bears for children with rare diseases to raise awareness and funds. In return, the quilter receives a photo of their bear with the child. My bear, I’ve named Novella (meaning a short novel) was specially made for me with pink fabric and a design of books by Christina Waters’ mom. Christina started RARE Science. Thanks Chris, for all your help and support with ADCY5!”
Join forces with RARE Science, Inc. a non-profit organization that helps find cures for kids with rare disease. The RARE Bear Project is a community driven initiative and is supported by the ever-growing RARE Bear Army of volunteers that help make one of a kind bears for special one of a kind kids. Gifted RARE bears will have a serial number specifically made for a child in our program. Some RARE bears will also be made for gifts for those who donate a certain amount to our programs to support rare disease research!
There are millions of children with rare diseases. Since these diseases are not normally the focus, these children are often misdiagnosed and/or do not have medicines available for them. 30% of these children die before their 5th birthday. RARE Science believes and have already demonstrated that by empowering Parents and Foundations with tools to navigate the healthcare system, build patient communities and clinical/research teams focused on these diseases, we can accelerate finding more immediate treatments. RARE Science facilitates a focused, accelerated approach that addresses the urgency needed to help the most vulnerable of patients, rare children.
Our philosophy at RARE Science is that alone we all can make great contributions to our community but together we can make transformative change! Although all the bears will be made to specified guidelines and pattern, it is the contribution of each team members “stash” and donations that make each bear unique. We need quilters, stuffers, donations of fabric and other material. Be a part of the RARE Bear Army, drive research forward for the rare disease community and change the lives of rare children!
