--Organization Will Utilize GPS and Web Services to Build a Patient-Driven Platform for the Epidermolysis Bullosa (EB) Community and Accelerate a Cure --
Horizon Therapeutics plc (Nasdaq: HZNP), in collaboration with MIT Solve, a marketplace for social impact innovation, is proud to announce the winning solution of this year’s Horizon Prize: Patient-Driven Data Platform for Rare Disease by EB Research Partnership. The EB Research Partnership will receive $150,000 in funding to continue improving the quality of life of people who have been diagnosed with EB, a family of life-threatening rare genetic disorders that affect the body's largest organ: the skin. Individuals with EB lack critical proteins that bind the skin's two layers together. Without these proteins, the skin tears apart, blisters, and shears off, leading to severe pain, disfigurement, and internal and external wounds that may never heal.
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“On behalf of patients and families living and managing Epidermolysis Bullosa every day, I would like to thank Horizon Therapeutics and MIT Solve for awarding us the resources to create a comprehensive, centralized platform for these patients and the medical community that supports them,” said Michael Hund, chief executive officer, EB Research Partnership. “Quality of life for these patients and their families means their physicians are able to collaborate in real time, families can quickly find the best physician in close proximity and researchers have a comprehensive database of experiential and clinical information they can use to find treatments, or a cure.”
EB patients are called “Butterfly Children” because their skin is as fragile as the wings of a butterfly. Children with severe EB face shortened life expectancy, ranging from infancy to 30 years of age. There are no treatments or cures available for these disorders. The EB Research Partnership has created an innovative data platform uniting rare disease stakeholders through clinical information and social connectivity to accelerate cures. The platform centralizes comprehensive patient data, resources, and clinical trial information that is accessible to EB investigators, patients, and industry partners to streamline the process of discovering cures.
“Congratulations to EB Research Partnership for winning this year’s Horizon Prize,” said Tim Walbert, chairman, president and chief executive officer, Horizon. “We applaud your vision to leverage GPS and established web service providers to make it easier for patients and families to connect with each other, find clinical trials for EB, consolidate care information and also add comprehensive information into a platform that will help researchers find better treatments and a cure. Your solution will make a significant impact on the community.”
“We are incredibly inspired by EB Research Partnership’s work to address real-time connectivity for these patients with physicians, caregivers and other families living with these disorders in one platform that can serve as a model for the larger rare disease community,” said Alex Amouyel, Executive Director, MIT Solve. “Congratulations on your innovative patient-driven data platform and this well-deserved recognition.”
Last year’s Horizon Prize focused on speeding diagnosis and care for people impacted by rare disease. This year, the Prize focused on improving quality of life for those diagnosed with rare diseases. Nearly 180 innovators, founders and inventors from around the world applied to answer the question “How can we improve the quality of life of people who have been diagnosed with a rare disease?” EB Research Partnership was selected from five finalists: Vula Mobile, Hollo (Digi-ACT), Infiuss, and SiA™ AI First Platform. You can read more about each finalist here.
Each year, The Horizon Prize will pose a unique question to encourage innovators and entrepreneurs to try to solve a problem associated with the rare disease community. For more information on The Horizon Prize visit https://solve.mit.edu/challenges/horizon-prize-2022.
About MIT Solve
Solve is an initiative of the Massachusetts Institute of Technology (MIT) with a mission to drive innovation to solve world challenges. Solve is a marketplace for social impact innovation. Through open innovation Challenges, Solve finds incredible tech-based social entrepreneurs all around the world. Solve then brings together MIT’s innovation ecosystem and a community of Members to fund and support these entrepreneurs to help them drive lasting, transformational impact. Join Solve on this journey at solve.mit.edu.
Horizon is a global biotechnology company focused on the discovery, development and commercialization of medicines that address critical needs for people impacted by rare, autoimmune and severe inflammatory diseases. Our pipeline is purposeful: We apply scientific expertise and courage to bring clinically meaningful therapies to patients. We believe science and compassion must work together to transform lives. For more information on how we go to incredible lengths to impact lives, visit www.horizontherapeutics.com and follow us on Twitter, LinkedIn, Instagram and Facebook.