Enfermedades Raras o Huérfanas, en Perú más huérfanas que raras

摘要

In the year 2011, Law 29698 was promulgated "Law that Declares National Interest and Preferential Attentionthe Treatment of People with Rare or Orphan Diseases ". This law proposesa National Plan for prevention, diagnosis, comprehensive care, treatment, rehabilitation andERH monitoring, a National Registry of Patients, guarantees for medicines for ERH, as well asa budget forecast. Unfortunately, a first regulation of the year 2012 contemplated only399 diseases and 8 of them prioritized without a technical argument and has not been ratified. Asecond more inclusive regulation (without excluding any diseases or priorities) has beenmade as a National Plan, which are ready from the beginning of 2016; not yetThey 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) broughtdown the intention to have the desired regulation. After all, the ERH are once againorphans, this time for the political ups and downs, we hope that the impasse is overcome as soon aspossible. The more than one and a half million citizens with ERH and their families deserve it.