Patients and families coping with undiagnosed rare medical conditions may experience unique challenges in accessing appropriate medical care and social support. Undiagnosed patients include those who are “not yet diagnosed” because they have not been referred to the appropriate medical specialist as well as patients who have a condition not previously described and for which a diagnostic test is not yet available.
Support for the undiagnosed is an important part of NORD’s mission. This includes advocacy on important public policies as well as educational outreach to medical professionals and students. In 2016, NORD collaborated with an international group of patient organizations to address the needs of undiagnosed patients. Read the final report and key recommendations.