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The Marfan Foundation & Backpack Health Partner to Offer Unique Tech Platform to Help People Living with Marfan Syndrome and Related DisordersPORT WASHINGTON, N.Y., April 24, 2018 /PRNewswire/ -- The Marfan Foundation and Backpack Health, LLC jointly announce a groundbreaking new partnership that enables The Marfan Foundation to create a patient registry, leveraging the power of de-identified, aggregated data to perform meta analyses, advance the understanding of Marfan syndrome and better support their communities of patients. Patients will also receive customized information to manage and support their care. "By working together, The Marfan Foundation and Backpack Health can accelerate our joint mission of empowering patients affected by rare disease, advancing research goals, fostering strong community ties with patients, and allowing individuals to play an active role in research that may lead to new treatments," said Michael Weamer, President and CEO, The Marfan Foundation. The first-ever Marfan Syndrome and Related Disorders International Patient Registry is scheduled to launch in May 2018. The registry provides a critical opportunity for patients around the world to participate in research that can have implications for generations to come. Upon user consent, the healthcare information provided will be de-identified and aggregated, making it possible for researchers to leverage the power of the data and analyze it to increase the understanding of these conditions and find better ways of diagnosis and treatment. The initial goal is to enroll 6,000 patients in three years. Those who join the registry will have the added benefit of complimentary access to Backpack Health's upgraded subscription to help manage their healthcare records. This provides patients with a dynamic app-based personal health records tool that works on any device to make information manageable, shareabe, portable and even translatable. The app seamlessly collects, manages and stores health records across multiple providers in five languages. "We know that there are many hurdles that patients experience when trying to keep track of their health and manage complex and chronic conditions. That is why we are thrilled to partner with The Marfan Foundation to provide a new level of support for patients who need it most," said Jim Cavan, Founder and CEO of Backpack Health. "I am excited by the prospect of channeling the energy and commitment of our patients and their advocacy groups such as The Marfan Foundation, dedicated and passionate clinicians throughout the world, and institutions with global vision and reach such as Backpack Health. We will be joined by pharmaceutical partners to harness clinical observations and basic science advances to positively impact both the length and quality of life for people with Marfan syndrome and related disorders. We are individually strong, but collectively invincible," said Hal Dietz, MD, Victor A. McKusick Professor of Medicine and Genetics, Investigator, Howard Hughes Medical Institute, Director, William S. Smilow Center for Marfan Syndrome Research, Institute of Genetic Medicine, Departments of Pediatrics, Medicine, and Molecular Biology & Genetics, Johns Hopkins University School of Medicine. Marfan Syndrome and The Marfan Foundation The Marfan Foundation, with headquarters in Port Washington, NY, creates a brighter future for everyone affected by Marfan syndrome and related conditions. We work tirelessly to advance research, serve as a resource for families and healthcare providers, and raise public awareness. We will not rest until we have achieved victory. Learn more and get involved at www.marfan.org. Backpack Health Contact: Eileen Masciale
View original content with multimedia:http://www.prnewswire.com/news-releases/the-marfan-foundation--backpack-health-partner-to-offer-unique-tech-platform-to-help-people-living-with-marfan-syndrome-and-related-disorders-300635409.html SOURCE The Marfan Foundation |