ADCY5 Gene Mutation Support and Research Organization - ADCY5 International Patient Registry
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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!”
- Lilly G.
Rare Science works directly with patient families and foundations to find more immediate therapeutic solutions for children with rare diseases.
Christina Waters, PhD MBA
President/CEO RARE Science, Inc.
Email: info@ADCY5.ORG +1.858.882.7280
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