International joint recommendations to address specific needs of undiagnosed rare disease patients

EURORDIS-Rare Diseases Europe, together with SWAN UK, the Wilhelm Foundation, Rare Voices Australia (RVA), the Canadian Organization for Rare Disorders (CORD), the Advocacy Service for Rare and Intractable Diseases’ stakeholders in Japan (ASrid) and the National Organization for Rare Disorders (NORD) jointly submit a list of recommendations to address the specific needs of patients without a diagnosis urging all stakeholders to recognise undiagnosed patients as a specific population within the rare disease community. Undiagnosed rare disease patients require the availability of a complete health and social care pathway in advance of receiving a diagnosis. For more information visit this link.