Commitment Queen Letizia makes her most personal cause visible to the UN: rare diseases
For another year, Queen Letizia has presided over the act that the Spanish Federation of Rare Diseases (Feder) organizes on the occasion of its world day.
Making these diseases visible, which affect 1 in 2,000 people in Europe, and finding a way to finance their treatments is one of the
causes
to which Felipe VI's wife is most committed.
Doña Letizia does not limit herself to sponsoring this act, but throughout the year maintains contacts with Feder, is informed about the advances in research and also
organizes hearings
with advisory committees on Rare Diseases.
The investigation is a cause, in addition to institutional, personal of the Queen.
For this reason, for a decade he has
presided over this event every year,
which for the first time has been held outside of Madrid.
Specifically, the appointment has taken this edition to those summoned to the city of
León
.
There, in her Auditorium, Doña Letizia addressed the crowd in a very emotional speech at times.
The wife of Felipe VI has recalled that this act is organized to "try to explain and understand what it means
to live with a rare disease
."
During her speech, the Queen praised the figure of Feder, "a reference" in the field of rare diseases, whose strength "is managing to
improve the lives
of people who suffer from a rare disease and their families".
"There are many achievements and even more remains to be done," said the Queen.
However, she has recognized Feder's work "so that all of Spanish society has, we have, always present that in our country there are
three million people
who suffer from a rare disease".
Doña Letizia has reflected on what lies behind the figures: "What remains is
the value of a person's life
", she said.
"That person, on many occasions is a small person", she has insisted because, as she has recalled, a "very high percentage" of those who suffer from these diseases are children.
"She looks
at us sometimes tiredly or unconcernedly
or with questions that crowd her throat", she has described.
The Queen has recalled that Feder is "for answers.
For relief, even if it is momentary.
For consolation on occasions. For administrations and institutions to commit. To push in the same direction, which is that of the value that each day, the life of a person".
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