Friday, November 22, 2024
11/22/2024
PROJECT SUMMARY Rare diseases are defined as those diseases affecting less than 1 in 5000 patients in the US. Although singularly rare, combined there are over 7000 rare disease that affect approximately 1 in every 10 Americans. For these patients, it is often difficult to find or build patient support networks or gain access to the latest research on their particular rare disease. The team in the Sanford Research's Coordination of Rare Diseases at Sanford (CoRDS) registry program has a nine-year history of hosting an annual rare disease symposium for medical professions, scientists, rare disease patients, and patient advocates. This event, which started as a grassroots effort, serves as a collaborative research summit drawing attendees from across the Great Plain states. With this proposal, our goal is to grow this once one-day event into a multi-day Great Plains Rare Disease Summit that will provide access to the highest standard of scientific and clinical research in a format that is accessible to patients, advocates and community members. Incorporating this mix of attendees encourages communication between the research and patient communities. Investigators will come away from the meeting having heard the patient's story and have a better understanding of how the disease impacts the person. Likewise, patients and advocates will come away with a better scientific understanding of their condition and can go back to their communities as more effective and energized advocates for rare disease research and awareness. Although rare disease events are held across the US, none are held consistently in the Great Plains region. For families and patient advocacy groups with high medical costs and health barriers, attending these events can be cost prohibitive or logistically challenging. By bringing the conference to the region in which they live, we are providing a much needed, mutually beneficial connection to the research world. Our objective is to establish the Great Plains Rare Disease Summit as a destination conference for scientists, medical professionals, patients, advocates, and industry throughout the US. Each year, the conference will promote groundbreaking research in rare diseases and provide an important avenue for conversation between scientists, clinicians, and those affected by the diseases they study and treat. We will achieve these objectives by 1) providing rural rare disease patients, caregivers and advocates access to a high quality rare disease education and support; 2) providing a forum for experts to present cutting edge research; 3) building up the rare disease community in the region for patients, caregivers, and advocates; and 4) developing an innovative new program that promotes rare disease education and research in the Great Plains.
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