An exhibition on rare diseases, in which the IIS Aragón participates, takes place on the Gran Vía in Zaragoza

Last Friday, the exhibition “We are rare but we exist” was inaugurated on Gran Vía street in Zaragoza, part of the campaign to raise awareness of rare diseases of which the IIS Aragón is a part.

Visibility of rare diseases. This is the main objective of the Exhibition “We are rare, but we exist” which was inaugurated this morning on the Gran Vía in Zaragoza. The sample has its origin in the proposals made by the associations of patients with rare diseases in the project developed at the Miguel Servet University Hospital on “The Protagonist Patient.” This project brings together associations, professionals and patients with different pathologies in dialogue tables to improve health care. 

Participating in the presentation were Marian Orós, Minister of Social Policies and Delegate Councilor for Equality of the Zaragoza City Council; Manuel Corbera, general director of Mental Health of the Aragonese Government; Elena Delgado, head of the Education, Participation and User Rights service of the Government of Aragon; Sara Berdejo Martínez, from SOMOS PERA Association.; and José María Soria de Francisco, FEDER Territorial Representative in Aragon.

This exhibition consists of 20 creatives in which some of the associations explain how they work, how they emerged, what some of these diseases consist of, as well as how to access these entities. The associations that appear in the exhibition are a representative part of the large number of groups that work for patients suffering from these pathologies. 

Rare diseases are considered those that, in Europe, have a low prevalence, less than 5 cases per 10.000 inhabitants. It is estimated that they affect between 6 and 8% of the population, which means that in Spain there are more than three million people with a rare disease, and in the case of Aragon, between 80.000 and 90.000 affected.

Around 80% of rare diseases are of genetic origin and over 50% are neurological in nature. They can affect 4% of newborns.

The first symptoms of rare diseases appear at different times in life, and may manifest at birth, in childhood or in adulthood. 

The associations of patients who suffer from this type of pathologies and the Spanish federation of rare disease associations have been created to bring together patients with common interests in this area. Ignorance of these diseases often makes these people feel isolation and incomprehension and these associations have among their objectives to respond to these situations. This lack of knowledge sometimes causes the diagnosis and consequently its treatment to be delayed.

Therefore, the early detection It is essential for the initiation of strategies to confront the disease, since if it cannot be cured, an attempt is made to alleviate its consequences or the disabilities that it can generate. Aragón is one of the communities that performs the highest number of neonatal screenings, which helps in the diagnosis of many of these pathologies. 

Patients and professionals insist that research is undoubtedly the most important way to advance in this area.

These associations have among their objectives to respond to the needs of people with rare or undiagnosed diseases who suffer a continuous evolution by offering information and answers to the queries and continuous questions of patients who in many cases do not know what is happening to them. Guidance, information, support and help are some of the services provided by the associations.

The patient associations present in the sample are Somos Pera, FEDER, AEMC-CHIARI Association, ALDA, Aragonese Retinal Association, ASMES, ASENARCO, ANSEDH, ARAELA, APSATUR, ASPHER, ALADA, HEMOARALAR, Spanish Association of Rett Syndrome, Spanish Ichthyosis Association and Aragonese CF Association. Other entities that appear in the campaign are Casa del 13 and Aragon Health Research Institute.

Source: Government of Aragon