• The mortality rate of Dravet syndrome is about 15 percent, half due to sudden unexpected death in epilepsy. Boosting research of this disease is of vital importance for patients suffering from this severe encephalopathy.
Madrid and Tel Aviv – Feb 4, 2021 – Dravet Syndrome Foundation Spain and Tel Aviv University today announced that the organizations have entered into a partnership to develop new scientific tools for Dravet syndrome. This new collaboration will promote the search for new treatments for patients suffering from this disease, potentially improving their quality of life and that of their caregivers.
Dravet syndrome is a severe form of epilepsy that affects one in 16,000 births. Patients with this developmental and epileptic encephalopathy suffer from severe and frequent seizures, as well as speech and developmental delays, and motor and behavioral issues, among other comorbidites. Categorized as a rare disease, patients and families may struggle to find physicians knowledgeable about their condition to manage them, they may suffer the consequences of the disease and go completely unrecognized, and current treatment options are limited. Therefore, there is a necessity to increase the knowledge of Dravet syndrome, and an urgent need to find better treatments.
In that context and with the ultimate goal of improving patients’ quality of life, Dravet Syndrome Foundation Spain –which since 2011 raises awareness, supports families and promotes research– collaborates with the group of Dr Moran Rubinstein at Tel Aviv University in Israel to develop new treatment strategies for Dravet syndrome. As a result, over the next two years, new knowledge and scientific tools for the study of Dravet syndrome will be made available. These tools will be open access, available to the international scientific community, and therefore will have the potential to accelerate the understanding and study of Dravet syndrome.
“We are thrilled to be working with Moran’s research team and hope this collaboration will turn into positive results for the Dravet syndrome community”, said Jose Angel Aibar, President and Chief Executive Officer of Dravet Syndrome Foundation Spain.
About Dravet syndrome
Dravet syndrome, also called severe myoclonic epilepsy of infancy, affects one in 16,000 births, so it is considered a rare disease, and has a mortality rate of about 15%. It is caused by the mutation of the gene SCN1A. This syndrome begins in the first year of life of the affected child, with seizures triggered by fever followed by drug-resistant epilepsy. It also causes severe cognitive, motor and speech delays, as well as behavioral issues, among other comorbidities.
About Dravet Syndrome Foundation Spain
Dravet Syndrome Foundation Spain was founded in 2011 by a group of parents with children affected by this rare disease, a group of impatient patients who do not resign themselves to the course of this disease. Its objective is to facilitate, foster and promote the development of research in the environment of Dravet syndrome in order to progress in the knowledge of its causes, improve its diagnosis and find effective treatments to mitigate –or even eliminate– the effects of this disease.
As part of its national and international actions, Dravet Syndrome Foundation Spain is a member of the Spanish Patient Forum, Feder, Eurordis, Rare Epilespy Network, Alliance for Regenerative Medicine, Patient Focused Medicines Development, and Dravet Syndrome European Federation (of which Dravet Syndrome Foundation Spain is also founder).
About Tel Aviv University
Located at the heart of Israel’s high-tech, commercial and cultural center, Tel Aviv University (TAU) represents Israel at its best – dynamic, innovative and forward-thinking. TAU was established in 1956 as a small local college. It has since evolved into Israel’s largest and most influential research university, with 30,000 students enrolled in 130 schools and departments across the spectrum of sciences, humanities and arts. TAU is a Reuters Top 100 Global Innovation University and ranks 4th in Europe for winning prestigious ERC Starting Grants for early career scientists.
In the biomedical field in particular, the University is a national leader. It is home to Israel’s largest concentration of scientists and clinicians investigating all aspects of medical science; some 1,400 TAU researcher-clinicians work in 17 TAU-affiliated hospitals. These close, collaborative ties ensure that research conducted in the lab has every opportunity to be translated into real-world therapies and technologies to ease suffering, enhance quality of life and save lives. Indeed, TAU has several drugs and treatments for Alzheimer’s, Parkinson’s, ALS and other neurodegenerative diseases in the development pipeline.
Other recognized TAU strengths include brain studies, cyber security, AI, management studies, nanoscience, renewable energy, film and Biblical archaeology, to name but a few. Cutting-edge scientific advances are reinforced through ties with prominent research partners including Harvard, Stanford, UC Berkeley, Northwestern, Columbia, NIH, NASA, Max Planck Institute, Tsinghua University among many more.
TAU is Israel’s first choice for students, and its graduates are the most sought after by Israeli companies. TAU also puts tremendous emphasis on globalizing its campus, offering dozens of international programs in English that attract over 2,300 students from 60 countries annually.