Dup15q Alliance Family and Science Conference to connect researchers with families affected by dup15q syndrome

Dup15q 联盟家庭和科学会议将研究人员与受 dup15q 综合征影响的家庭联系起来

基本信息

批准号：
8985161
负责人：
Kadi Luchsinger
金额：
$ 0.6万
依托单位：
DUP15Q ALLIANCE
依托单位国家：
美国
项目类别：
财政年份：
2016
资助国家：
美国
起止时间：
2016-07-07 至 2017-06-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/8985161
关键词：
15q Address Adolescence Adult Affect Area Autistic Disorder Awareness Behavior Behavior Therapy Behavioral Behavioral Genetics Blood specimen Cannabinoids Caring Cessation of life Characteristics Child Childhood Chromosomes Clinic Clinical Sciences Collection Communication Communities Counseling Data Databases Development Developmental Delay Disorders Diagnostic Disease Education Educational process of instructing Electroencephalography Engineering Epilepsy Extended Family Face Family Fostering Funding Genetic Counseling Genetic Markers Genetic Research Glean Health Personnel Hereditary Disease Home environment Image Individual Intervention Intervention Studies Intractable Epilepsy Lead Learning Life Medical Medical center Methods Mission Modeling Mus Muscle hypotonia Neurologist Newly Diagnosed Outcome Parents Participant Play Rare Diseases Recreation Registries Research Research Personnel Risk Science Scientist Seizures Siblings Site Stem cells Suggestion Symptoms Syndrome System Targeted Research Technology Testing Therapeutic Time Tooth structure Treatment Protocols Tube United States Update Vision Woman Work base behavior test cognitive regression cognitive testing experience family support genetic counselor high school impression improved insight meetings member men mouse model nervous system disorder novel strategies public health relevance social symposium teacher

项目摘要

DESCRIPTION (provided by applicant): After gathering current information on research, treatments and best practices at the conference, families will return to their local communities and share the information with their healthcare providers, therapists, teachers and extended family. Not only does this improve the lives of the individuals with dup15q syndrome, but it spreads awareness about this rare disorder.

描述（由申请人提供）：在会议上收集了有关研究，治疗和最佳实践的最新信息之后，家庭将返回当地社区，并与他们的医疗保健提供者，治疗师，教师和大家庭共享信息。这不仅可以改善DUP15Q综合征的人的生活，而且还可以传播人们对这种罕见疾病的认识。