President Gabriel Buric promulgated on Friday the law of rare, rare and orphaned diseases, an initiative that recognizes and gives Health priority to these pathologies and is approved after fourteen years of processing.
“What we do not know cannot be healed, so this is a tremendously important first step,” the Chilean president celebrated during the promulgation of the new law, which establishes the creation of a list of rare diseases and a national record of people who suffer from them.
The initiative will also create a technical commission that will advise the Ministry of Health with the aim of defining a more comprehensive public policy.
It is estimated that there are currently more than 8,000 rare diseases that would affect between 6 and 8 % of the population, which in Chile would translate into a million people, according to government data.
“The low number of cases of these diseases usually hinders the appropriate access to health care, to a diagnosis and a treatment,” said Boric, who said that “one of the things that this law allows us is to deliver clear information,” responding to the demand for “certainty” of affected families.
-“when there is a boy or girl with a rare disease, there is generally a woman who takes care of, and that woman who takes care of is working,” added the president, who recalled that the Executive is promoting the National Care System with the aim of “visible, recognize, and in the future to value that work.”
The system, which was approved by the Chamber of Deputies and Deputies in March of this year, also proposes to generate a support network for people who require care and for caregivers.
“No person, regardless of their place of birth or wherever you live, should face a disease alone. Even more when it is rare, even more when it is difficult to diagnose and treat,” concluded the Chilean president.
The speed of the approval of the Law of Rare Diseases, presented for the first time in 2011 via parliamentary motion, was one of the Boric promises in the public account he made in 2024, where he announced the sending of indications to the project, which were presented by the Government in June of the same year.
In January 2025, the proposal went to the Chamber of Deputies and Deputies, where it was approved unanimously in mid -April.
