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Data will be used <\/span>to <\/span>help improve<\/span> policy, access, resources\u00a0<\/span><\/span>\u00a0<\/span><\/strong><\/em><\/p>\n WASHINGTON, DC, October 21, 2024 \u2013 Today, the National Organization for Rare Disorders (NORD) introduced the Living Rare Study<\/a>, a groundbreaking multi-year research initiative designed to capture and analyze the experiences of those living with a rare disease. As the first large-scale study of its kind in the United States, it will explore challenges faced by individuals and caregivers in the rare disease community, highlighting critical gaps in resources and healthcare.<\/span>\u00a0<\/span><\/p>\n \u201cRare diseases affect more than 30 million Americans and represent a significant public health issue. Yet without comprehensive data, their collective impact remains largely invisible,\u201d said Pamela Gavin, Chief Executive Officer of NORD. \u201cThe Living Rare Study will change that by gathering data directly from those impacted, providing the information needed to advocate for the changes our rare disease patient community so urgently needs such as expanded insurance coverage, enhanced newborn screening and more.\u201d<\/span>\u00a0<\/span><\/p>\n Created with input from individuals with rare diseases and their caregivers, the study is designed to explore various aspects of living with a rare disease, including healthcare access, daily life management, emotional well-being and the financial burdens families face. By examining social determinants of health like geography and access to care, the study also aims to reveal how these and other factors may shape health outcomes for those with rare diseases.<\/span>\u00a0<\/span><\/p>\n \u201cFor the first time, we\u2019ll have robust data that not only captures medical challenges but also illustrates the broader social and economic effects of rare diseases,\u201d said Edward Neilan, M.D., Ph.D., <\/span>Chief Medical and Scientific Officer, NORD. \u201cThese insights are crucial for transforming the way rare diseases are managed and ensuring more equitable care.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n NORD will use the study\u2019s findings to identify key issues, shape programming and educate the public and lawmakers about the compounded difficulties of living with a rare disease. NORD plans to publish ongoing research reports exploring these factors and using the data gathered to help inform policy and resource allocation at both the national and local levels.<\/span>\u00a0<\/span><\/p>\n The Study is open to anyone who has been diagnosed with a rare disease or suspects they may have one. Caregivers of those with a rare disease can also participate in the survey, providing a vital and often unexplored perspective to the research. The survey is user-friendly and flexible, allowing people to complete it at their own pace and update their information annually. Participants can also compare their responses to the combined responses of other participants. Data collected will be securely stored on NORD\u2019s IAMRARE\u00ae<\/sup> platform<\/a>, which is fully HIPAA-compliant, ensuring participants\u2019 privacy.<\/span>\u00a0<\/span><\/p>\n \u201cLiving with a rare disease creates a ripple effect that touches every part of life \u2014finances, emotional well-being, careers, and relationships,\u201d said Gavin. \u201cThe more people who join the study, the more powerful the data becomes to drive change and ultimately, create a better future for those with rare diseases.\u201d<\/span>\u00a0<\/span><\/p>\n