National Organization for Rare Disorders and OpenEvidence Partner to Bring AI-Powered Rare Disease Resources to Clinicians and Patients Worldwide

NORWELL, Mass. & MIAMI--(BUSINESS WIRE)--The National Organization for Rare Disorders (NORD®) and OpenEvidence today announced a new partnership to expand access to trusted, expert-reviewed rare disease information for clinicians, patients and families.

Together, NORD and OpenEvidence will help build and scale a growing library of rare disease summaries in both clinician-focused and patient-friendly formats, combining AI-powered synthesis of the biomedical literature with expert review from specialists recommended by NORD, including experts from the NORD® Rare Disease Centers of Excellence Network. The collaboration is designed to make high-quality rare disease information easier to find, easier to understand, and easier to keep current for the communities that need it most.

For the more than 30 million Americans and more than 300 million people worldwide living with a rare disease, the path to diagnosis and care is often long, complex and isolating. Patients can wait years for answers, and even after diagnosis, families and clinicians alike must navigate a fast-moving and highly fragmented body of information across thousands of rare conditions. This partnership aims to help close that gap by expanding the availability of expertly reviewed content and updating it on an ongoing basis as evidence evolves.

OpenEvidence plans to launch a library of more than 3,000 rare disease summaries, updated monthly through its editorial system. Experts recommended by NORD will help review the clinician-facing content to support clinical accuracy, real-world relevance, and alignment with the latest rare disease research and care practices.

NORD will also support the development of patient-friendly versions designed to make complex medical information more accessible to patients, caregivers, and families. These resources will help extend the reach of trusted rare disease education beyond the point of care and support more informed conversations throughout the diagnostic and treatment journey.

“People living with rare diseases and the families who support them deserve access to information they can trust, and clinicians need reliable resources they can use in real time,” said Pamela Gavin, MBA, Chief Executive Officer of NORD. “Our partnership with OpenEvidence will help bring more expert-reviewed rare disease information into the world in formats designed for both clinical care and patient understanding. It is an important step toward connecting emerging knowledge with informed care and empowered patients.”

The rare disease pages are integrated directly into the OpenEvidence platform, where they surface automatically when clinically relevant and synthesize the latest research into a clear, practical format for clinicians. Patient-friendly versions will be disseminated through NORD Rare Disease Database to help reach patients, caregivers and families worldwide. By combining advanced AI capabilities with human expert review, the collaboration is intended to increase both scale and quality: more conditions covered, more frequently updated, and more accessible to the clinicians and families navigating rare disease every day.

“Rare disease is exactly the kind of problem AI should be helping to solve: a vast, fragmented literature that no single clinician can master on their own,” said Travis Zack, MD, PhD, Chief Medical Officer of OpenEvidence. “By combining the scale and synthesis capabilities of AI with review from NORD experts, we can build resources that are comprehensive, current, and trustworthy, for both the clinicians and the patients they serve.”

Together, NORD and OpenEvidence aim to strengthen the connection between clinical knowledge and patient education, helping clinicians recognize rare conditions sooner, supporting more informed care decisions and giving patients and families better access to understandable, up-to-date information throughout their journey.

About the National Organization for Rare Disorders

Founded in 1983, the National Organization for Rare Disorders (NORD®) is a leading independent, nonprofit organization dedicated to improving the health and lives of people with rare diseases. In partnership with more than 350 disease-specific member patient organizations and 46 NORD Rare Disease Centers of Excellence, NORD advances care, research, education and advocacy on behalf of the rare disease community.

About OpenEvidence

OpenEvidence is the most widely used medical AI platform among U.S. physicians, and is trusted by hundreds of thousands of verified clinicians to make high-stakes clinical decisions at the point of care with answers that are sourced, cited, and grounded in peer-reviewed medical literature. OpenEvidence was founded with the mission to organize and expand the world's collective medical knowledge. Learn more at openevidence.com.