International Dravet Syndrome Awareness Day
June 23, Sunday
International Dravet Syndrome Awareness Day is celebrated on June 23 and is dedicated to raising awareness of Dravet syndrome, a rare and severe genetic disorder that causes severe epileptic seizures and various neurological problems. The day aims to support patients, their families, and the healthcare professionals who treat the condition.Dravet syndrome (also known as childhood myoclonic epilepsy syndrome) is a rare genetic disorder that usually appears in the first years of life. It is characterized by the following symptoms:
Severe epileptic seizures. Children with Dravet syndrome often have different types of seizures, including tonic, clonic, and myoclonic. These seizures may be resistant to conventional treatment.
Development of neurological impairment. Children with the syndrome may experience developmental delays, problems with coordination and motor skills, and learning difficulties.
Other comorbidities. Children with Dravet syndrome often have behavioral and mental health problems, such as anxiety and depression.
Goals of International Dravet Syndrome Awareness Day
Raising awareness. The main goal of the day is to inform the public, health professionals, and the scientific community about Dravet syndrome, its symptoms, treatment, and the need for early diagnosis.
Supporting families. International Dravet Syndrome Awareness Day also aims to support families affected by the condition, providing them with information and resources to help them cope.
Raising funds for research. The day is marked by various events aimed at raising funds for research that will help develop more effective treatments and improve the quality of life of patients with Dravet syndrome.
Events and initiatives
Educational campaigns. Organizations working in the field of neurology and epilepsy hold educational events, webinars, and lectures to raise awareness of Dravet syndrome.
Webinars and conferences. Online and offline events are held where experts share the latest advances in research and treatment of the syndrome.
Support and resources for families. Organizations provide information and resources for families to help them better understand their child’s condition and cope with its effects.
Social media. Social media is used to spread information about Dravet syndrome, including personal stories and testimonies of families affected by the condition. Hashtags and topical posts help unite people around one goal - raising awareness.
International Dravet Syndrome Awareness Day in other years
International Dravet Syndrome Awareness Day in other countries
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