Success in implementation of Policy towards the treatment of Rare Diseases in Brazil
 
Following the success of the First Ibero-American Congress on Rare Diseases held in Brazil (Read the report in OrphaNews), the Ministry of Health has published a Policy that will further the cause the of Rare Disease patients, in the Federal District and other measures in the Diario Oficial Do Distrito Federal (Official Gazette of the Federal District): the official gazette of legislative exchanges in Brazil. The policy mandates several provisions for specialised health services for rare disease patients. According to this policy, treatment of rare disease patients should be followed at a reference center. However, they also maintain that in the absence or insufficiency of Centres of Reference on rare diseases, the executive branch can create the necessary centers, or enter into agreements with federal, state and local government agencies or institutions, with a view to provide these services. In addition, the document clarifies the objectives of the Reference Centers for Rare Diseases adding that their performance should follow the principles of Evidence Based Medicine and the Ministry of Health protocols for identified rare diseases. This law came into force on the date of its publication in the Diario Oficial Do Distrito Federal, whereas the government is scheduled to regulate this act within ninety days of the publication.

Diario Oficial Do Distrito Federal (Portuguese)