Los Angeles, C.A. June 19, 2017. Rare Genomics Institute (RG) is the grateful recipient of RARE Bears from RARE Science Inc., a non-profit organization that helps find cures for kids with rare disease. The hand-made teddy bears are scheduled to be shipped today to 13 undiagnosed and rare disease children who have received free clinical Whole Genome Sequencing through the Rare Genomics program. This includes US-based families that reside in the states of Wisconsin, Massachusetts, Florida and California, as well as international families that live in Canada, Chile, The Netherlands, Hong Kong and Australia.
Each RARE bear is customized for each child recipient. To develop the bear design, families are asked to provide vital information about the child recipient including their age, favorite color and top hobbies.
“Now thanks to RARE Science we can give our kids a tangible gift, a bear that is unique to them, special just like they are. We just want to make them smile.” said Romina Ortiz, MHS, COO and VP of Patient Advocacy, who is leading this operation for Rare Genomics Institute.
As the children receive their gifts in the mail, we have asked the parents to send back photos with the bears. RARE Science and Rare Genomics will publish these beautiful photos and stories across social media outlets as they are shared. We hope that this will provide more awareness to the tremendous need these families have and give hope to other families just starting their journey to achieve a diagnosis and cure.
“We would LOVE a RARE bear. She's super excited. She asked how long it takes, her birthday is in June!”- Mother
The RARE Bear Program and Rare Genomics Program are patient advocacy projects aimed to support undiagnosed and rare disease patients. For more information on how to support these programs, please contact firstname.lastname@example.org
About Rare Genomics Institute
RG is a 501(c)(3) non-profit that makes cutting edge research technologies and experts accessible to rare disease patients. Partnering with top medical institutions, RG helps custom design personalized research projects for diseases so rare that no organization exists to help. By providing an expert network and an online crowdfunding mechanism, RG helps families source, design, and fund personalized research projects in diseases not otherwise studied. Ultimately, RG aims to expand on its current genome sequencing-focused approach to enable support for whatever type of research is necessary to get closer to rare disease therapeutics.
About RARE Science
RARE Science accelerates finding therapies for kids with rare and undiagnosed disease by empowering patient families/foundations with tools that help with community awareness and patient outreach through our RARE Bear Program. We also drive research by pooling knowledge and providing research tools for specific diseases so we can understand the biology that is responsible for the observable traits of rare disease. This helps identify therapies that may help in the more immediate future. We unite patient families, clinicians and researchers across the globe to accelerate finding cures for the most vulnerable patients, our children! Our RARE Bear Program plays an instrumental role in patient family support. In addition, the RARE Bears help us with patient outreach, education and awareness to improve early diagnosis and support our research programs to help accelerate finding cures for kids with rare disease.