Rare or orphan diseases: more orphan than rare in Peru

Abstract

In the year 2011, Law 29698 was promulgated "Law that Declares National Interest and Preferential Attention the Treatment of People with Rare or Orphan Diseases ". This law proposes a National Plan for prevention, diagnosis, comprehensive care, treatment, rehabilitation and ERH monitoring, a National Registry of Patients, guarantees for medicines for ERH, as well as a budget forecast. Unfortunately, a first regulation of the year 2012 contemplated only 399 diseases and 8 of them prioritized without a technical argument and has not been ratified. A second more inclusive regulation (without excluding any diseases or priorities) has been made as a National Plan, which are ready from the beginning of 2016; not yet They have been officialized. A final version was pre-published on February 28 (day of the ERH) for discussion; but the change of the presidency of the Republic (together with his cabinet) brought down the intention to have the desired regulation. After all, the ERH are once again orphans, this time for the political ups and downs, we hope that the impasse is overcome as soon as possible. The more than one and a half million citizens with ERH and their families deserve it.

Keywords

• Rare diseases