急救措施
急救措施
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卓蔚简介
卓蔚宝贝支持中心，是中国内地首家专门针对Dravet综合征，为患者家庭提供支持服务的民办非企业单位。
We are CHN Dravet Syndrome Patient Support Group (hereinafter Dravet CHN), the first independent organization dedicated to providing support to the families affected by Dravet syndrome in Chinese mainland.
组织前身“卓蔚倡导”成立于2018年5月，由患儿家长自发成立，2020年5月正式注册成功。卓蔚工作组现有骨干成员50余名。卓蔚宝贝支持中心成立至今，得到了医生、学者、患者枢纽组织、企业、机构等多方的支持。
Our organization, previously named CHN Dravet Syndrome Advocacy, was established in May 2018 by a group of parents, and was formally registered in May 2020. Dravet CHN Team is composed of over 50 members of staff and volunteers. Since the inception of Dravet CHN, we have received support from doctors, academics, patient organization platforms, corporations, and institutions.
卓蔚宝贝支持中心的决策和监督机构是执行委员会，围绕「患者关爱」「社会倡导」「医疗协作」，采用项目制的方式开展工作。项目由负责人牵头协调，招募家长志愿者和外部志愿者参与、引进外部资源支持，共同推进项目实施和组织发展。
At Dravet CHN, the Board of Directors is responsible for decision-making and supervision. Our work is project-based and centers around patient care, social advocacy, and medical collaboration. For each project, a leader coordinates and recruits parent and external volunteers, and brings in external resources to advance the project execution and organizational development.
卓蔚愿景
Our Vision
治愈 Dravet 综合征。
Find a cure for Dravet syndrome.
卓蔚使命
Our mission
关爱Dravet综合征患者家庭，推动研究进展，呼吁社会支持。
To bring hope to families living with Dravet Syndrome; promote medical research; and increase social advocacy.
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