Aerbeco urges administrations to promote measures to encourage the prevention of rare diseases

The Association of Rare Diseases in Benidorm and the Region (Aerbeco) has demanded that the administrations and institutions promote measures to promote the prevention of rare diseases, research, early diagnosis and treatment, pharmacological and other types of therapies in time and conditions.

A demand that Juan Miguel Martínez Bueno has made, reading a manifesto at Plaza de SS MM. Reyes de España, on the day that World Rare Disease Day is celebrated. An event that has had the presence of the majority of the municipal corporation, with the mayor Toni Pérez at the head and the councilor for Social Welfare, Ángela Zaragozí.

Martínez showed that more than half of the families with very common diseases wait more than six years to obtain a diagnosis and that only 6% of the more than 6,417 identified in Europe have treatment. It is estimated that between 6 and 8% of the world's population lives with these pathologies. About 300 million worldwide, three of them in Spain. "We must remember that behind every campaign, every need and every symptom there are people and families" said Juan Miguel Martínez.

The president of Aerbeco urged the competent administrations to "establish tax systems to promote research into rare diseases" and considered "fundamental" to continue promoting epidemiological information, a register of patients and information on rare diseases without diagnosis. He has also asked to "ensure rapid and equitable access to diagnostic tests, especially genetic tests", for which it is essential to "implement personalized and precision medicine with professional resources".

Among the requests made in the manifesto, Martínez also advocated "achieving access in time and conditions of equity" to the medicines authorized in Europe and "speeding up the financing process". He also called for comprehensive care by “humanising healthcare, ensuring equal access to services such as functional rehabilitation and paediatric palliative care”. Finally, Martínez called for ensuring access to social services by “improving the assessment of disability in time and identifying strategies for social-health coordination between the Health Department and Social Services”.