Recommendation on Codification for Rare Diseases

Group of Experts on Rare Diseases at the European Commission (EC) adopted at its meeting of November 12 to 13 in Luxembourg recommendation to improve the codification of rare diseases. Very small fraction of rare diseases have codes in international nomenclatures, making them a challenge to track patients with rare diseases in health care information systems at national and international level. The presence of codes for each disease will help health authorities to gain a better understanding of healthcare pathways and their impact on the specialized health services (centers of expertise), and on the country’s budget and planning of health and social services. The full text of the recommendation can be found on the website of the European Commission.