The Government of Spain has expressed its commitment to the development of the healthcare and research network at a European level that will ensure the care required by the 30 million patients with rare diseases in the EU.
This has been underlined during a speech at the XI European Conference on Rare Diseases and Orphan Products organised by the European Organization for Rare Diseases ‘Eurordis’.
The Minister of Health highlighted the progress being made within the framework of the European Union to respond to the needs of people with rare diseases, with the creation, among others, of assistance and research infrastructures, such as the Space European Data.
A new online resource “of great value to expand the research networks of rare diseases and innovation in their treatment”, valued Carolina Darias, who has also highlighted in this line the State Registry of Rare Diseases, “one of the first examples of population surveillance systems that we have today”.
In this context, she recalled that Spain currently participates its 110 reference centres, services and units (CSUR) of the National Health System in the 24 European reference networks that exist.
Likewise, she reviewed some of the main advances and future initiatives that our country is working on, such as the new Clinical Management Computer Platform that will allow greater integration with European reference networks and will make it easier for care resources, thanks to Telecare, are within the reach of patients with rare diseases.
“We will ensure that it is the information that travels and reaches them without the limitations of distance”, Carolina Darias emphasised.
Similarly, she reiterated the Spanish Government’s commitment to research in the field of rare diseases at a European level, through the International Disease Research Consortium and the Joint European Program for Rare Diseases.
A task in which, at a national level, the structural initiative IMPaCT of the Carlos III Health Institute stands out, whose objective is to provide genomic tools for the characterisation of undiagnosed diseases after the maximum clinical effort and whose main beneficiaries are clearly people with rare and undiagnosed diseases.
Along the same lines, she also highlighted the work being carried out to update the National Health Service common portfolio of genetic care services and the efforts to continue expanding the catalogue of orphan drugs with public funding, which, in 2021 alone, grew by 56%, being the year with the highest growth.
