Health

PERTE for Vanguard Health, “milestone” for rare diseases

The Government has announced an increase in the public investment in the Strategic Project for Economic Recovery and Transformation (PERTE) for the Vanguard Healthincreasing the initially planned item of €982 million until the 1.5 billion. The decision, highlights the Spanish Federation of rare diseases (FEDER), member of we are patientsconstitutes “a milestone for the group of people with rare diseases, since the specific investment in genomic medicine Y advanced therapiestogether with the implementation of medicine personalizedaims to improve the time of access to a diagnosis and development of new therapies that respond to the main challenges of these pathologies”.

The announcement was made at the last meeting of the alliance of PERTE for Vanguardia Health, an entity chaired by the Ministry of Health and the Ministry of Science and Innovation and formed, among other public and private institutions, by FEDER, the Spanish Association Against Cancer (AECC), the Platform of Patient Organizations (POP) and the Spanish Patient Forum (EFF). A strategic Alliance that, aims Juan Carrionpresident of FEDER, “it turns out very hopeful given that it portends the development of treatments and therapies for the thousands of rare diseases that lack approach”.

In fact, PERTE itself acknowledges that only a 8% of the more than 4,600 minority pathologies collected in the Information Center for Rare and Genetic Diseases of the National Institutes of Health of the United States has a authorized treatmentand in this context, points out the Federation, indications of new drugs based in gene therapy for hundreds of rare diseases, as well as the possibility that more than 3,000 of these pathologies can potentially be treated with these innovative techniques.

For Caroline DariasMinister of Health, “the purpose of this project is the health improvement of the population. And this hand in hand with the progress of science, of innovation state-of-the-art healthcare. And to achieve this future, FEDER points out, “it is important to generate among all the agents involved formulas that allow us move the impact that these initiatives will have on the lives of people who live with minority pathologies”.

– Today, 110 patient associations dedicated to rare diseases are already active members of Somos Pacientes. And yours?

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