Rare diseases have their place on the agenda of Queen Letizia in Argentina

"It was a very positive meeting. The Queen is a person who knows the subject, who is very committed and who promotes it in the different countries that she has the opportunity to visit."So he summarized Infobae Luciana Escati Peñaloza, executive director of FADEPOF, the meeting that lasted about an hour and described it as "a very important opportunity for the institution and for the country to position rare diseases on the public health scene".

It is estimated that in Argentina, one in three people has one of the 8,000 rare diseases identified by the World Health Organization (WHO), which affect an average of one in four families on average. .

Queen Letizia is strongly committed to rare diseases 10 years agoand ratified again on March 4 in the 12th edition of the Rare Disease Day in Madrid, when he said that people with these diseases "deserve to improve the time to diagnosis," he said. access to treatment and benefit coverage ". "They deserve anything that alleviates an often infuriating, painful and exhausting situation, they deserve understanding, support, resources and attention, they deserve our active commitment and deserve results," he said.

"The commitment I am asking from here is to make possible the means by which investigations can progress. this is already underway and public-private collaboration agreements are facilitating the investment needed to open new investigations, "he added earlier this month.

Today's meeting was aimed at publicize the situation of the 3.5 million people with rare diseases in the country: difficulties in getting a diagnosis in time, the limited availability of qualified professionals to identify and adequately treat these diseases and barriers to access to full treatment, among other problems.

Escati Peñaloza is the mother of a 19-year-old girl with Crohn's Disease at the age of eight and founder of the Más Vida Crohn's Foundation and Ulcerative Colitis, which she preside also. And about the meeting, he said that "Queen Letizia presided over the table and invited the First Lady and the Minister to take the pulse of what is happening in the world with rare diseases at the national level".

The representatives of ALIBER, meanwhile, "told us about the situation in the country and asked the First Lady and Minister Stanley to get involved in these issues." "They became aware of our reality and expressed their intention to engage and give impetus to our task"Escati Peñaloza pointed out that the specific request made to the holder of the Social Development and Health portfolio was to "work together to implement the National Plan to Combat Unusual Diseases".

"Although a first step has been taken in this respect with the creation of National Rare Diseases Program by regulatory decree 794/2015, We must renew the commitment to implement it and to establish a national plan", said the executive director of FADEPOF.

As for the first lady, Escati Peñaloza emphasized having seen "sensitized to the theme". "It is a reality that may not be close, but the country was ready to continue to raise public awareness of this problem," he said.

The color data was represented by the emotional gift of FADEPOF to the queen: "We give him a silver pin; a rose handmade by the grandfather of a baby with a rare disease, who is a silversmith who worked with (Juan Carlos) Pallarols. "Also, at three o'clock (Awada, Stanley and Queen Letizia), we gave them an acrylic plaque with the logos of the 68 logos of the entities that make up FADEPOF" he counted.

About the entities sitting at the table with the queen
Founded in 2013, ALIBER is an organization that coordinates actions to strengthen the badociative movement, to give visibility to rare diseases and to represent people with rare diseases in the Ibero-American region before local, regional, national and international organizations. by creating a collaborative and permanent space to share knowledge, experiences and good practices in the social, health, education and labor fields.

FADEPOF is a non-profit civil society organization (CSO), constituted and led by its own community of patients and / or family members, which became a workspace in June 2011 and formally established in December 2013 .

Currently, he has the participation of 68 members among organizations and groups of patients and / or relatives of various rare diseases. It works at the national level, within the framework of regional and global alliances, representing and supporting communities of people and their family and social environment.