The new giant mural by Martín Ron already shines in Parque Patricios: what is his message

Those who pass by Pedro Chutro at 3400, in Parque Patricios, will be able to appreciate a huge mural by Martín Ron with the image of a child with a rare disease (EPOF), who hugs a balloon and looks longingly towards the park where other children they play and laugh.

The initiative was from the Argentine Federation of Rare Diseases (Fadepof) that proposes to shed light on the rare realities experienced by people with EPOF and their families.

This Tuesday, February 28, is EPOF day.

The mural is 

and is located in front of the Penna Hospital.

“Martín Ron managed to represent with his art the realities that little is known about what people with some EPOF experience on a daily basis.

The image has many symbolic elements, such as the catheter representing the care that these diseases require, together with the traditional heart-shaped balloon in a gesture of clinging to their right to health”, interpreted Luciana Escati de Peñaloza, Executive Director of Fadepof.

Ron maintained that “for the second consecutive year, Fadepof and Takeda have been kind enough to summon me to join this crusade for the EPOF.

In 2022, the mural symbolized -in the difficult assembly of a Rubik's cube- the entire odyssey that a patient with EPOF must go through until they reach the diagnosis.

This year we focus on the campaign slogan, which is the

.

As these diseases occur mostly in childhood, the image of a child hugging a balloon symbolizes everything he would like to do, but that his situation sometimes prevents him from doing so.

Rare diseases are all those that in our country have a prevalence equal to or less than 1 person per 2,000 inhabitants.

A total of more than 8,000 EPOFs have been described, which although each individually affects a small group of people, together they represent 8% of the population, which in Argentina is equivalent to 3.6 million people.

The EPOF National Law No. 26,689, enacted in 2011, guarantees comprehensive health care for people with EPOF and their families, and the protection of their right to health, including comprehensive coverage of the treatments they need.

However, from Fadepof they affirm that this is not always fulfilled and that patients must face obstacles and delays for the approval of their diagnostic studies and for the timely delivery of the medications.

PS

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