RARE Science, Inc.
Anna Capria is an accomplished professional with extensive experience in bioinformatics, outreach, and community engagement. Currently serving as Outreach Coordinator and Bioinformatic Analyst II at the J. Craig Venter Institute, Anna drives initiatives that enhance engagement in virology research while contributing to significant bioinformatics projects. In a volunteer role as Head of Patient Outreach at RARE Science, Inc., Anna coordinates efforts to support the rare disease community. Previous roles include Bioinformatics Software Developer Intern at Boston Children's Hospital and Leadership positions at Keck Graduate Institute and Uppsala University, showcasing a strong commitment to professional development and collaboration. Anna holds a Master of Science in Human Genetics and Genomic Data Analytics from Keck Graduate Institute and a Bachelor's degree in Biomedical Sciences from Rochester Institute of Technology.
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RARE Science, Inc.
RARE Science is a non-profit research organization, that through a unique collaborative approach, works directly with patient families and foundations to find more immediate therapeutic solutions for children with rare disease. There is a large unmet need to support patient families and provide resources that bridge the gap to navigating the health care system in rare diseases. The RARE Science Platform enables information and data sharing across stakeholders and organizations fostering collaboration, which builds efficiency and speed to finding a therapy. At RARE Science, Inc. we have a RARE approach of empowering patient families and foundations with the tools/resources they need to drive forward finding a cure. In parallel we assist in building a collaborative strategy across all stakeholder communities by using a neutral common data portal called the RARE Hub. The tools available through the RARE Hub enable data sharing across the different stakeholders. In addition, at all times the end goal – a therapy – is the driving force for the implemented strategy focusing on safety, efficacy and the urgency of time. Our 3 step approach: 1.) Unite the patient community through building registries rich in patient reported information, research and clinical data. 2.) Unite research and clinical communities specializing in the disease area. 3.) Unite all stakeholders through activities that foster collaboration building efficiencies to accelerate clinical trials with our partner Agility Clinical, an expert in international rare clinical trials For more information visit our website at www.rarescience.org