Today, June 23rd is International Dravet Syndrome Awareness Day. This is a rare and catastrophic disease that affects 1 in every 16,000 births. The disease manifests during the first year of life and is characterized by prolonged and recurrent febrile seizures, which are often resistant to conventional antiepileptic medications. In addition to seizures, children with Dravet Syndrome may experience cognitive developmental delays, movement problems, language difficulties, and behavioral issues, as well as an increased risk of additional health problems such as respiratory and cardiac disorders. This disease has a significant impact on the quality of life of affected children and their families, and currently, there is no cure.
At Rosan International, we want to offer our full support to the families and the Dravet Syndrome Foundation in Spain, which carries out an impressive work of supporting patients and their families. As part of this work, the foundation is supporting various innovative therapies to improve the management and quality of life of those affected by this syndrome, including gene therapies that, for the first time, represent a hope for a cure.
Facebook Fundación Síndrome Dravet
In addition to disease-modifying therapies, patients and their families have numerous monitoring and therapy needs. We want to take this day to announce the collaboration of Rosan International with the Foundation for the development of AI-based solutions for the management and treatment of Dravet Syndrome. We also encourage you to participate in the many visibility initiatives carried out by the Foundation and its families, such as:
- RetoDravet: A platform for promoting and raising awareness about Dravet Syndrome through solidarity sports and other cultural and social events, belonging to the Dravet Syndrome Foundation.
- Events: Solidarity races, bazaars, webinars, etc..
- Research Grants: Call for Innovative Research Projects in Advanced Therapies for Dravet Syndrome..
- Webinars: Current and relevant topics for patients and families with Dravet Syndrome.
- Dorsal Solidario: A charitable campaign that involves purchasing a personalized solidarity race bib with the name of your choice and participating in your favorite sport during the month of June.
- Etc…
About the Dravet Syndrome Foundation
The Dravet Syndrome Foundation is the national organization for patients with Dravet Syndrome. It was established in 2011 by a group of parents with children affected by this rare disease. Its main objective is to promote and ensure the development of research in the field of Dravet Syndrome to advance the understanding of its causes, improve diagnosis, and find effective drugs and treatments that can mitigate or even eliminate the consequences of the disease.
More information and media:
+34 691 416 115
comunicacion@dravetfoundation.eu
About Rosan International
ROSAN is a technology company specialized in the development of Data Science and Artificial Intelligence solutions with the aim of solving the most challenging global projects. Contact us to discover how we can help you gain valuable insights from your data and optimize your processes.