关于我们/ Who we are

        Dravet综合征(DS)是一种婴儿期起病的罕见难治性癫痫综合征，既往称婴儿严重肌阵挛性癫痫(SMEI)，在中国影响约2-5万个家庭。DS临床特点为2~15月龄起病，开始常为热性惊厥,随后逐渐出现多种发作类型的无热发作；发作具有热敏感的特点；病程中容易出现癫痫持续状态(SE)；抗癫痫发作药物(ASMs)疗效欠佳，有不同程度的发育迟缓或智力障碍，家庭因此面临着疾病社会知晓不足、基层医院急救水平有限、康复干预及融合教育等社会支持相对匮乏等多重严峻挑战，严重影响患者及其家人的生活质量，并给家庭带来巨大的心理压力和沉重的经济负担。

        Dravet Syndrome (DS), also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and refractory type of epilepsy that often begins in infancy. It affects approximately 20,000-50,000 families in China. Seizures in DS usually begin during the first 2-15 months of life, often in the presence of febrile convulsion. Afebrile seizures of various types may occur thereafter; patients with DS are especially susceptible to seizures triggered by heat; they are inclined to have status epilepticus (SE) in the course of disease; anti-seizure medications (ASMs) are often ineffective and may lead to varying degrees of developmental delays or cognitive impairments. Families of  DS patients are hence confronted with daunting challenges such as low public awareness of the disease, limited emergency service at primary care hospitals, and lack of social support regarding rehabilitation intervention and inclusive education. This not only severely affected the quality of life for patients and their families but also imposes significant emotional stress and financial strain..

        2018年5月4日，数位患儿家长联合发起成立Dravet综合征自救小组，现名为“卓蔚宝贝支持小组”，致力于为患者家庭提供疾病管理与照护方法信息，跟进疾病与治疗的前沿进展，助力多方协作、促进疾病研究，弥补罕见病药物开发在全生命周期中面临的断档缺位问题，倡导提”升相关方对疾病的认知，倡导提升决策部门对临床需求的理解，倡导提升社会资源对患者家庭的支持，努力为面临Dravet综合征挑战的家庭争取更好未来。

        On May 4, 2018, Dravet Syndrome Patient self-rescue team was co-founded by a group of parent- volunteers with children affected by DS, now, known as “CHN Dravet Syndrome Patient Support Group”. Our mission is to keeping families of DS patients informed about disease management and care practices,, as well as the latest in disease and treatment research through multi-party collaboration, and ensuring the full lifecycle management of orphan drug development. As advocates for raising disease awareness, enhancing decision-makers’ understanding of clinical needs, and increasing public support to families of DS patients, we dedicate ourselves to improving the future for families impacted by this condition.

        2018年5月，Dravet综合征列入中国第一批罕见病目录，获得国家审评加速、医保报销等政策支持，陆续有相关医疗产品获得支持，即获批上市或纳入医保。

In May 2018, DS was added to China’s first list of rare diseases. Supported by national policies  for expedited review and Medicare reimbursement, a series of related medical products have been approved for market launch or have been included in Medicare coverage.

使命：患者支持、社会倡导、研究协作

Mission: Patient Support, Social Advocacy, Research Collaboration

愿景：为了治愈，携手同行

Vision:  To cure Dravet Syndrome