Alex Waldron

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