McGovern加入了新的NORD罕见疾病卓越网络
麦戈文医学院has announced its designation as a NORD Rare Disease Center of Excellence, joining a highly select group of 31 medical centers nationwide as part of an innovative network seeking to expand access, advance care, and research for rare disease patients in the U.S.
该计划由国家罕见疾病组织（NORD）领导，目的是促进全国专家之间的知识共享，将患者与适当的专家联系起来，无论疾病或地理位置如何，治疗和研究。beplay苹果手机能用吗
“以前从未有过在全国范围内认识到我们照顾罕见疾病的人们的地方。”希望医学博士希望，教授pediatrics和医学遗传学部门的主任。“We’ve never had a way to designate different academic institutions, hospitals.”
“It became apparent to me that we needed this because different centers of excellence around the school were all independently applying to NORD for resources — that was my driving force for getting the whole medical school involved. This designation recognizes that we’re giving cutting-edge care — some of the best in the U.S. — for many rare disorders.”
患有罕见疾病的人经常在寻找诊断和优质护理诊所时面临许多挑战。在建立卓越计划的中心，NORD已指定美国各地的临床中心，这些中心提供了出色的罕见疾病护理，并表现出了对使用整体，最先进的方法来为罕见疾病患者及其家人服务的深刻承诺。
NORD在竞争激烈的申请过程中选择了每个中心，需要证据表明与多个专业的专家配备人员，以满足罕见疾病患者的需求，并为罕见疾病患者教育，医师培训和研究做出了重大贡献。beplay苹果手机能用吗
制定了北欧罕见疾病卓越计划，以为罕见疾病社区的所有成员取得更好的结果。这种合作伙伴关系致力于通过建立和实施新的护理标准并围绕新的治疗方法，疗法和研究来推动罕见疾病领域的发展。beplay苹果手机能用吗
Any disease that affects fewer than 200,000 people in the U.S. is considered rare, according to the National Institutes of Health. There are over 7,000 rare diseases and 25-30 million Americans estimated to be currently living with rare diseases. More than 90 percent of rare diseases lack an FDA-approved treatment.
“目前，太多的罕见疾病没有建立的护理标准。卓越计划将帮助设定该标准 - 适用于患者，临床医生和医疗中心。”埃德·尼兰（Ed Neilan）, chief scientific and medical officer of NORD. “We are proud to announce McGovern Medical School as a NORD Rare Disease Center of Excellence and look forward to their many further contributions, as we collectively seek to improve health equity, care, and research to support all individuals with rare diseases.”
The majority of rare disease care and education at McGovern Medical School is centered in the Department of Pediatrics and its comprehensive programs that provide world-class care for the most fragile and vulnerable population of children, The UTHealth High Risk Children’s Program and the Chronic Health Oriented Services for Ninos (CHOSEN) program. The programs are enhanced medical homes designed to reduce fragmentation of care and lower the incidence of serious illness and the related costs.
麦戈文医学院also features a Combined Internal Medicine and Pediatrics (Med-Peds) training program to help with the transition from pediatric to adult care, and there is a Med-Peds inpatient team at Memorial Hermann Hospital/Children’s Memorial Hermann Hospital that frequently cares for young adults making the transition from pediatric to adult care.
此外，医学院罕见疾病的许多卓越中心（COE）都有名称和认证，例如结节性硬化症综合体（TSC），LAM（淋巴管菌病）诊所和Uthealth Neurosciences Huntington病（HD）诊所之间其他。McGovern还具有针对特定稀有疾病的COE，例如儿科神经退行性疾病的治疗中心，糖原储存疾病（GSD）中心，先天性diaphragmatic疝（CDH）指定研究中心等等。beplay苹果手机能用吗
有关NORD稀有疾病卓越计划的更多信息，以及中心的完整列表，请访问该计划的网站。