Por Redaccion Adrián Barbón has participated in the national event held in Oviedo/Uviéu on the occasion of the world day dedicated to these pathologies, which was attended by Queen Letizia.
The President of the Principality, Adrián Barbón, announced today the establishment of a rare diseases unit at the HUCA, which will allow for the collaboration of different specialists and the performance of tests, and will include a small day hospital. The head of the Executive explained the main lines of this initiative, on which the Ministry of Health is already working, during the national event commemorating the world day to raise awareness of these conditions, an event that was presided over by Queen Letizia.
This decision by the Government of Asturias adds to the formation of a working group to implement the Rare Diseases Strategy of the National Health System, the increase in the number of neonatal screenings, and the study of a pioneering initiative to identify couples with chromosomal defects. «Despite the enormous task ahead, we are improving. In Asturias, we all take care of each other,» expressed the president.
Barbón also emphasized that «no one should feel sidelined, marginalized, without the attention that every human being deserves.» «Because we are humans, what happens to others also affects us. Let’s accept that we are all unique,» he highlighted.
Here is his complete intervention:
INTERVENTION OF THE PRESIDENT OF THE PRINCIPALITY OF ASTURIAS, ADRIÁN BARBÓN
Official event for Rare Diseases Day
A person who is indifferent to the pain of others has a serious problem within. Societies built on the absence of empathy are fragile, lacking the strong foundation of solidarity. In the Asturias I envision, the Spain I desire, and the world I dream of, no one should feel left out, marginalized, without the attention that every human being deserves.
This event, the annual gala of the Spanish Federation of Rare Diseases, has made me reflect deeply on these issues. I believe that the term «rare disease» leads to misunderstandings. For example, it can make us think that we are safe. It is very common to believe that what is rare, strange, or infrequent only happens to others. What can happen to me, who is so normal?
Something similar happened years ago with natural disasters: they were something distant that only affected parts of the world that were already suffering; now that they have entered our homes, we understand that they concern us all. The first thing we should internalize is that, precisely because we are human, what happens to others also affects us. Simply put, let’s acknowledge that we are all unique.
You are familiar with the criteria that classify these types of illnesses. It doesn’t make much sense for me to repeat prevalence rates, or delve into which are more common than others, or explore the growing possibilities offered by genomics. That’s what statistics, medicine, and research are for.
My words will be less technical. It only takes a minimum of sensitivity to realize that any unusual or even unknown disease has become a daily companion for someone, their family, and friends. Unfortunately, often a harsh lifelong companion.
It only takes, I repeat, a simple effort to put ourselves in the shoes of others. Imagine the unease while waiting for a diagnosis that can take years to arrive.
Then, accept that treatments may not guarantee complete healing. At the same time, face the psychological aftermath, the soul’s ailment that grows with distress. And finally, see time pass without new therapeutic options being discovered through research.
I believe that Asturian society, marked by solidarity, knows how to make this effort. Five years ago, the pandemic broke out, and we coined a motto that remains valid and fits this event: in Asturias, we all take care of each other. I repeat: we all take care of each other.
This motto also guides the work of the Ministry of Health, represented today by its head, Conchita Saavedra. With humility, because we are very aware that we have much to do, I can assure you that our public healthcare system is strengthening its focus on these types of conditions. In fact, I can reveal that a rare diseases unit is being designed at the HUCA, the flagship of Asturian healthcare, which will allow for the simultaneous collaboration of several specialists and the performance of various diagnostic tests. Naturally, it will be adapted for possible mobility issues and will include a small day hospital.
It is another step that follows other decisions, such as integration into the epidemiological research network, the increase in the number of neonatal screenings, which will rise to 28 pathologies this year, and the formation of a working group to implement the Rare Diseases Strategy of the National Health System in Asturias. As early detection is so crucial, we are considering implementing a pioneering initiative: identifying couples with chromosomal defects and therefore a high risk percentage. It would be a screening, but done before conception.
I stress humility. This is not about boasting but about contributing, recognizing that, despite the enormous task ahead, we are improving. Those of us with public responsibilities are obliged to be realistic but also to offer commitment and hope. That is what I have tried to do with this intervention. To explain that the Government of Asturias – and especially the Ministry of Health – does not feel alien to your demands.
I thank you for choosing Oviedo for your national gala. This event can have a significant impact. I dare to publicly request the collaboration of the media to give it greater prominence. Hopefully, it will serve as a drumbeat, a wake-up call for society as a whole, to make us more aware of the need to pay greater attention to rare diseases.
Remember, here in the Principality, we are trying because in Asturias, we all take care of each other. You can count on us.
FUENTE