The Government of Spain’s Investigo programme has definitely promoted the creation of the SAER-UVa

• The state reference centers of the Government of Spain, such as Soria or Burgos, develop lines of work that could complement the activities of this new service • The Digital Health strategy will promote the care of rare diseases in the National Health System

February 26, 2024.- The subdelegate of the Government in Soria, Miguel Latorre, said in the presentation of the Socio-Educational Advice and Support Service for Social and Educational Companies on Rare Diseases (SAER-UVa), of the University of Valladolid, that the Investigo program of the Government of Spain has definitely promoted the creation of this service.

This programme seeks to recruit young job seekers in order to develop research and innovation initiatives. It is managed by the Public Service of State Employment (SEPE) of the Ministry of Labor and Social Economy, within the Recovery, Transformation and Resilience Plan of the Government of Spain, with Next Generation EU funds.

The Investigo covers the hiring of young job-seeking researchers, aged between 16 and 29, in public research agencies, public universities, technology centers and other public and private entities involved in a research project. It has been managed with the funds of the PRTR, or Plan España Podemos, through the Junta de Castilla y León.

DIGITAL HEALTH STRATEGY

The deputy delegate also said that the Digital Health Strategy “will provide an important boost to the care of rare diseases in the National Health System.”

"The actions induced by this Spanish Government in this field - said Latorre - must bear important fruit. I talk about the promotion of Precision Medicine with the so-called 5P Plan (personalized, predictive, preventive, participatory and population medicine), or the GenES Plan, or the inclusion of four new neonatal screening programs for rare diseases in the Common Portfolio of the National Health System.”

RARE DISEASES

Latorre, who has congratulated the University of Valladolid on this initiative and more specifically its Social Research Unit in Health and Rare Diseases (UNISSER), has explained that although there is no single and consensual definition of what is a rare disease, in the European Union it is considered the thesis proposed by the European Commission of Public Health, which indicates that they are "diseases, including those of genetic origin, which are chronically debilitating or potentially deadly and which have such a low prevalence that combined special efforts are needed to combat them." Its prevalence is five cases per ten thousand inhabitants.

The representative of the Government of Spain in the province of Soria has emphasized that combating these diseases requires special combined efforts: “This is why administrations, organizations of all kinds, academic institutions, the families of those affected and affected and the sick and the sick themselves pray in the same direction to combat these diseases that, as we all know, present disadvantages with regard to clinical and experimental research and also the interest of the market. But public health policies cannot leave these people out.”

The World Health Organization estimates that there are some 7,000 rare diseases, although their number continues to grow year after year. In Spain they affect more than three million people and 630 million in the world, 8 percent of the population of the planet. These diseases are usually serious, chronic and cause people who suffer from them to need specialized and prolonged care or attention.

BELIEVE AND CREDEF

The Government of Spain has the State Reference Center for Care of People with Rare Diseases and their Families (Cree) of Burgos, which has as a strategic objective to achieve better care for people who have rare diseases.

This centre, under the auspices of IMSERSO, promotes measures to equalize opportunities in order to guarantee the access of those affected to recognized rights for other types of patients and patients. “We have to ensure fairness, quality, safety and efficiency in the services we provide to them,” said the deputy delegate.

The Grape initiative that has been presented today (at the gates, on February 29, of the commemoration of the Day of Rare Diseases), is focused to guide companies and educational centers of this autonomous community on the needs of workers and students affected by some of these diseases.

The subdelegate also recalled how just ten days ago he attended the presentation of an Accessibility Cabinet at the CREDEF in Soria. The CREDEF is another State Reference Center of the Government of Spain, like the Believe of Burgos, but specialized in socio-sanitary care for people in a situation of dependency.

This office advises on universal accessibility, on technology and on support products for people in situations of dependency. “The SAER of the University of Valladolid has at its disposal these centers of state reference to collaborate in the objectives that are common,” concluded the subdelegate.