49 destacado-imagen-Reunión Familias DRAVET 2024
SIGAUS, with the Dravet Syndrome Foundation’s annual family meeting
Last weekend, the annual family meeting of the Dravet Syndrome Foundation, with which SIGAUS has been collaborating since 2018, took place in Madrid. Dozens of families from across Spain gathered to learn about scientific and social advancements in this type of severe epilepsy mainly affecting children, and which is considered a rare disease. The meeting was also an important space for exchanging experiences, concerns and hopes. Ainhöa Lizarbe, Director of Institutional Relations and Communications at SIGAUS, was present, to show the organisation’s support for this Foundation.
18-03-2024
24 Párrafo-Reunión familias Dravet
Dravet syndrome is a rare disease occurring in 1 in 16,000 births. It is caused by a DNA mutation resulting in severe epileptic seizures beginning in the first year of life; these seizures lead to cognitive delays that worsen over time, as well as motor and behavioural difficulties throughout the patients’ lives. The Dravet Syndrome Foundation has been working in Spain for 13 years, founded and promoted by a group of dedicated parents to drive research towards a cure, advance in the knowledge of its causes, improve its diagnosis and support patients’ families. For nearly half of its journey, SIGAUS has been a collaborating organisation, providing continuous financial support and disseminating its work through its own communication channels.
32 Párrafo cita-Reunión familias Dravet 2024
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The Foundation chose to present one of its 2024 Dravet Awards to SIGAUS as a show of gratitude for its unwavering support over the past 6 years.
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On Saturday 16 March, the annual family meeting of the Foundation took place in Madrid. The event had an ambitious programme combining international speakers on the latest research into the disease with technical talks on treating and managing epileptic seizures, as well as providing a space for affected families to meet and exchange concerns, hopes and dreams.
At the end of the event, the Foundation chose to present one of its 2024 Dravet Awards to SIGAUS as a show of gratitude for its unwavering support over the past 6 years. Ainhöa Lizarbe, Director of Institutional Relations and Communications at SIGAUS, attended the event. She acknowledged the Foundation’s exceptional work and announced the continuity of the partnership from SIGAUS and, soon, from GENCI, the collective system of Extended Producer Responsibility established to provide management of commercial and industrial packaging waste in accordance with the law.
“It is a matter of great pride for us to support the research and family support efforts of the Dravet Syndrome Foundation. And we don’t just want it to be a financial contribution, but for the Foundation and its members to feel that we are there for them. We are making our dissemination channels available to them to raise awareness not only about this disease, but also about the courage and determination of this group of parents that comprise the Foundation, who will undoubtedly achieve their goal of finding a cure for their children’s disease. I have the greatest admiration for all of them,” said Lizarbe at the end of her participation in the forum.