A key development is the National Institutes of Health (NIH) announcing that its updated 2024 Public Access Policy <\/a>will now take effect on July 1, 2025 \u2014 six months earlier than originally planned. This policy, which updates one originally enacted in 2008, provides earlier access for patients and caregivers to federally funded research.<\/p>\n To meet growing needs, NORD is expanding its efforts in several key ways:<\/p>\n The NIH\u2019s updated policy and NORD\u2019s ongoing efforts reflect a shared commitment to maximum transparency. Access to clear, high-quality information can be life-changing for those navigating a rare disease.<\/p>\n NORD applauds the NIH\u2019s leadership and remains dedicated to working with medical experts and patient advocacy organizations to provide trusted information and support greater open access across the research community.<\/p>\n Whether you\u2019re newly diagnosed, supporting a loved one, or seeking answers after years of uncertainty, NORD\u2019s resources are designed to be approachable and empowering. Explore NORD\u2019s Rare Disease Database <\/strong>here<\/strong><\/a>, and find other resources for patients and caregivers <\/strong>here<\/strong><\/a>.<\/strong><\/p>\n \n","protected":false},"excerpt":{"rendered":" If you\u2019re living with a rare disease \u2014 or caring for someone who is \u2014 you\u2019ve likely faced the challenge of trying to understand a condition that your doctor hasn\u2019t … <\/p>\n![\"\"](\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/06\/shutterstock_1849932502-300x200.jpg\")
For years, NORD has been a trusted source for clear, patient-friendly information on rare conditions. Through the Rare Disease Database, NORD publishes expert-reviewed reports that help individuals understand symptoms, causes, methods of diagnosis, available treatments, and where to seek support. These reports are among the most visited resources on NORD\u2019s website, receiving approximately 1.5 million visits each month.<\/p>\n\n
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