Fundación Síndrome de Dravet: Driving research and hope for rare disease families
Rebuilding lives together
Living with a rare disease like Dravet Syndrome is a daily challenge for thousands of families. Characterized by severe epilepsy and developmental delays, this genetic condition requires constant care and specialized treatment. In Spain, the Fundación Síndrome de Dravet has become a key ally, pioneering scientific research while offering emotional and social support.
Founded by families who refused to give up, the foundation works to improve diagnosis, treatment, and quality of life.
How it all began
The Fundación Síndrome de Dravet was born from the determination of families who refused to accept the devastating course of this rare genetic disorder. Their inspiration was clear: to accelerate scientific research, improve diagnosis and treatment, and provide comprehensive support to families living with Dravet Syndrome.
The foundation’s mission is to:
– promote research
– improve quality of life
– raise awareness
Main challenges and achievements so far
Like many rare diseases, Dravet faces a severe lack of research funding. Families also struggle with educational and social inclusion, often compounded by low public awareness. The complexity of the conditions that combine multiple symptoms and comorbidities, adds daily stress, while therapies and products are not always covered by the public health system in Spain.
Despite these barriers, the foundation has achieved remarkable milestones:
– A strong support network for Spanish families
– The only patient-led research laboratory in Spain, fully dedicated to studying Dravet Syndrome and developing advanced therapies.
– Recognition from leading organizations such as the Spanish Society of Neurology and AELMHU.
This dual role – scientific and social – makes the foundation unique in the rare disease community.
A story of hope: Lucia
One of the most moving stories is that of Lucía, diagnosed with Dravet as a baby. Through the foundation, her family gained access to a clinical trial that greatly improved her seizure control. Today, Lucía attends an adapted school, joins inclusive activities, and her family has found stability and hope through the foundation’s support.
The power of collaboration
Progress would not be possible without collaboration. The support of the Konecta Foundation helps make projects sustainable and expand their reach.
In fact, the Fundación Síndrome de Dravet is proud to be one of the winners of the 14th Annual Call for Social Projects by Konecta Foundation. This recognition allows the foundation to strengthen its programs and continue developing innovative initiatives that improve the lives of families affected by Dravet Syndrome.
As the Fundación Síndrome de Dravet highlights, “Dravet Syndrome is complex and relentless, but together we can transform fear into knowledge, and isolation into community.”
They also stress the value of alliances: “The support of partners like Konecta Foundation allows us to turn ideas into real opportunities for families, reminding them they are not alone in this fight.”
Together, both organizations exemplify how collaboration between the scientific community, patient associations, and socially responsible partners can drive meaningful progress. By uniting research and compassion, they are building a future where every family living with Dravet Syndrome has hope, resources, and visibility.
