c*****d
发帖数: 99 | 1 小女孩3岁，刚被复旦大学附属儿科医院确诊为雷特综合症，家人期待早日得到有效治
疗。网上查了一下，没有特效治疗，主要靠加强护理，是这样子吗？在美国哪家医院治
疗比较靠谱？
万分感谢！ | c*****d
发帖数: 99 | 2 小女孩3岁，刚被复旦大学附属儿科医院确诊为雷特综合症，家人期待早日得到有效治
疗。网上查了一下，没有特效治疗，主要靠加强护理，是这样子吗？在美国哪家医院治
疗比较靠谱？
万分感谢！ | m********8
发帖数: 88 | 3 Rett syndrome很少见，认为是一种基因突变导致，但很少亲子遗传。在美也没啥特效
治愈方法，现在很多也只是处于实验室研究阶段。
以下是两个Rett syndrome的专题网站，可以让患儿父母经常关注。
https://www.rettsyndrome.org/research/our-research/
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/
Rett-Syndrome-Fact-Sheet
还有以下对Rett syndrome处于实验室阶段的研究中心清单，虽然不能治病，但可以关
注以下。
University of Alabama Birmingham Civitan International Research Center,
Birmingham, AL
University of California San Diego, Rady Children’s Hospital, San Diego, CA
University of California San Francisco Benioff Children’s Hospital Oakland,
Walnut Creek, CA
Children’s Hospital Colorado, Aurora, CO
Rush University Medical Center, Chicago, IL
Boston Children’s Hospital and Harvard Medical School, Boston, MA
Gillette Children’s Specialty Healthcare, Saint Paul, MN
Washington University School of Medicine Saint Louis Children’s Hospital,
Saint Louis, MO
University of Rochester Medical Center, Rochester, NY
Cincinnati Children’s Hospital Medical Center, Cincinnati, OH
Children’s Hospital of Philadelphia, Philadelphia, PA
Greenwood Genetic Center, Greenwood, SC
Vanderbilt University School of Medicine and Vanderbilt Kennedy Center for
Research on Human Development, Nashville, TN
Texas Children’s Hospital, The Blue Bird Circle Rett Center, Houston, TX
【在 c*****d 的大作中提到】
: 小女孩3岁，刚被复旦大学附属儿科医院确诊为雷特综合症，家人期待早日得到有效治
: 疗。网上查了一下，没有特效治疗，主要靠加强护理，是这样子吗？在美国哪家医院治
: 疗比较靠谱？
: 万分感谢！
| m********8
发帖数: 88 | 4 Rett syndrome很少见，认为是一种基因突变导致，但很少亲子遗传。在美也没啥特效
治愈方法，现在很多也只是处于实验室研究阶段。
以下是两个Rett syndrome的专题网站，可以让患儿父母经常关注。
https://www.rettsyndrome.org/research/our-research/
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/
Rett-Syndrome-Fact-Sheet
还有以下对Rett syndrome处于实验室阶段的研究中心清单，虽然不能治病，但可以关
注以下。
University of Alabama Birmingham Civitan International Research Center,
Birmingham, AL
University of California San Diego, Rady Children’s Hospital, San Diego, CA
University of California San Francisco Benioff Children’s Hospital Oakland,
Walnut Creek, CA
Children’s Hospital Colorado, Aurora, CO
Rush University Medical Center, Chicago, IL
Boston Children’s Hospital and Harvard Medical School, Boston, MA
Gillette Children’s Specialty Healthcare, Saint Paul, MN
Washington University School of Medicine Saint Louis Children’s Hospital,
Saint Louis, MO
University of Rochester Medical Center, Rochester, NY
Cincinnati Children’s Hospital Medical Center, Cincinnati, OH
Children’s Hospital of Philadelphia, Philadelphia, PA
Greenwood Genetic Center, Greenwood, SC
Vanderbilt University School of Medicine and Vanderbilt Kennedy Center for
Research on Human Development, Nashville, TN
Texas Children’s Hospital, The Blue Bird Circle Rett Center, Houston, TX
【在 c*****d 的大作中提到】
: 小女孩3岁，刚被复旦大学附属儿科医院确诊为雷特综合症，家人期待早日得到有效治
: 疗。网上查了一下，没有特效治疗，主要靠加强护理，是这样子吗？在美国哪家医院治
: 疗比较靠谱？
: 万分感谢！
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