Discover the program that has benefited more than 12,000 people with rare diseases

The IMPULSO Program has become a reference for families and associations by enabling the Access to valuable resources for children, youth and adults who suffer from a rare disease. Since the project was launched in 2019, thanks to the collaboration of Fundación Mutua Madrileña and the Spanish Federation of Rare Diseases (FEDER), more than 12,000 people have benefited.

In many cases of people suffering from a rare disease, it is the families who inevitably must bear the costs of these resources. For this reason, the Mutua Madrileña Foundation and FEDER joined forces to make access to therapies and support products possible.

This is the case of Asier, a ten-year-old boy from Madrid who is diagnosed with STXBP1 syndrome, a rare disease that causes a deficiency in the protein of the same name. The first symptom was deafness and forces him to wear cochlear implants. His family contacted the Guerreros Púrpura entity, associated with FEDER, when they were looking for “more emotional” support to cope with the day-to-day life that Asier’s condition represented, and through them, they were able to access this help.

And it is that, in addition to deafness, and a mental and motor delay, what revolutionized the daily life of Asier’s family It was the epilepsy that the little boy suffers from on a daily basis and that debuted when he was just over three years old. “It was because of the epilepsy that Asier underwent genomic testing and was diagnosed with STXBP1,” explains his mother, who describes her son’s medical history as “one blow after another.”

The IMPULSO Program allowed Asier’s family to acquire a second battery for his recent cochlear implant. This allows them to not be isolated from the world once the six hours of daily life of the battery have elapsed, as they can replace it. “Asier’s situation has taught me to live day to day and to be resilient. “You learn not to have big aspirations because they fall apart. This is life in its purest form… but more pronounced,” explains Rebeca, Asier’s mother.

In 2024, the IMPULSO program enables the development of 86 projects promoted by the FEDER associative network

In 2024, the IMPULSO programme enables the development of 86 projects promoted by the FEDER associative network. It is the most specialised agent in addressing rare diseases. and is best acquainted with the needs of patients. The IMPULSO Programme is particularly committed to associations that jointly present their projects.

Similar problems

Although 6,313 rare diseases have been detected in Europe, it is estimated that the real figure may reach more than 7,000. However, despite the heterogeneity of all of them, These diseases do have common features: 70% are genetic and pediatric, affecting mostly children. This is the reason why the IMPULSO Program has had a greater impact on this group.

70% of rare diseases are genetic and pediatric

In 2021, it was also opened to adults with the aim of stopping the spread of this type of disease. Only 6% of these have medicines and therapies such as physiotherapy or psychological care are the fundamental tools to stop these conditions.

Annual call

As it is an annual call, the IMPULSO Program allows to take the thermometer of the needs of this group with rare pathologies, identifying which therapies or support products are most in demand.

Thus, this year it has been detected that among the most urgent needs are: physiotherapy, speech therapy, psychological care and occupational therapy. Similarly, they have identified the most necessary support products for people with rare diseases as those for personal hygiene, rest, elimination of barriers, personal autonomy, communication aids or educational materials.

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