www.smithlemliopitz.org PR:4 Alexa排名:7971508 The Official Smith Lemli Opitz RSH

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网站综合信息 www.smithlemliopitz.org

标题:
The Official Smith-Lemli-Opitz | RSH F

关键字:
Smith Lemli Opitz Foundation Smith Lemli Opitz Syndrome RSH Foundati

描述:
Our mission is to support individuals affected by the Smith-Lemli-Opitz (SLOS) | RSH Syndrome, promo

域名信息
域名年龄:18年8个月20天 注册日期:2006年03月22日 到期时间:
邮箱:aojones 电话:+1.5302195363
注册商:FastDomain Inc. (R1455-LROR)

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IP:69.195.124.122 同IP网站6个详情
地址:美国犹他州盐湖城Bluehost公司

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244
25
pr:4

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0

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评级:1/10

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Alexa全球排名
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7,971,508

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135

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675

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dmoz目录收录
Health/Conditions_and_Diseases/Nutritional_and_Metabolic_Disorders/Inherited/Smith_Lemli_Opitz_Syndrome

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域名注册Whois信息

smithlemliopitz.org

域名年龄: 18年8个月20天
注册时间: 2006-03-22
注册商: FastDomain Inc. (R1455-LROR)
注册邮箱: aojones
联系电话: +1.5302195363

获取时间: 2015年07月23日 12:05:37
Domain Name:SMITHLEMLIOPITZ.ORG
Domain ID: D118948739-LROR
Creation Date: 2006-03-22T03:34:17Z
Updated Date: 2012-12-17T00:20:13Z
Registry Expiry Date: 2021-03-22T03:34:17Z
Sponsoring Registrar:FastDomain Inc. (R1455-LROR)
Sponsoring Registrar IANA ID: 1154
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Referral URL:
Domain Status: clientTransferProhibited -- http://www.icann.org/epp#clientTransferProhibited
Registrant ID:FAST-19118383
Registrant Name:Andrew Jones
Registrant Organization:
Registrant Street: 619 Benbow Court
Registrant City:Davis
Registrant State/Province:California
Registrant Postal Code:95618
Registrant Country:US
Registrant Phone:+1.5302195363
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Registrant Email:aojones
Admin ID:FAST-19118383
Admin Name:Andrew Jones
Admin Organization:
Admin Street: 619 Benbow Court
Admin City:Davis
Admin State/Province:California
Admin Postal Code:95618
Admin Country:US
Admin Phone:+1.5302195363
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Admin Fax Ext:
Admin Email:aojones
Tech ID:FAST-12785242
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Tech Organization:Bluehost.com
Tech Street: 1958 South 950 East
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Tech State/Province:Utah
Tech Postal Code:84606
Tech Country:US
Tech Phone:+1.8017659400
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Access to Public Interest Registry WHOIS information is provided to assist persons in determining the contents of a domain name registration record in the Public Interest Registry registry database. The data in this record is provided by Public Interest Registry for informational purposes only, and Public Interest Registry does not guarantee its accuracy. This service is intended only for query-based access. You agree that you will use this data only for lawful purposes and that, under no circumstances will you use this data to(a) allow, enable, or otherwise support the transmission by e-mail, telephone, or facsimile of mass unsolicited, commercial advertising or solicitations to entities other than the data recipient's own existing customers; or (b) enable high volume, automated, electronic processes that send queries or data to the systems of Registry Operator, a Registrar, or Afilias except as reasonably necessary to register domain names or modify existing registrations. All rights reserved. Public Interest Registry reserves the right to modify these terms at any time. By submitting this query, you agree to abide by this policy. For more information on Whois status codes, please visit https://www.icann.org/resources/pages/epp-status-codes-2014-06-16-en.

网站头文件(HTTP Header)

HTTP/1.1 200 OK
访问时间:2015年07月23日 12:14:50
X-Pingback: http://www.smithlemliopitz.org/xmlrpc.php
Link: ; rel=shortlink
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Content-Encoding: gzip
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抓取时间:2015年07月23日 12:05:35
网址:http://www.smithlemliopitz.org/
标题:The Official Smith-Lemli-Opitz | RSH Foundation Website
关键字:Smith-Lemli-Opitz Foundation, Smith Lemli Opitz Syndrome, RSH Foundation, RSH Syndrome, SLO, SLOS, SLOS Awareness, 7-deh
描述:Our mission is to support individuals affected by the Smith-Lemli-Opitz (SLOS) | RSH Syndrome, promote awareness, and to fund research into treatments and ultimately a cure.
主体:

The Official Smith-Lemli-Opitz | RSH Foundation Website
Home
About SLOS
Forum
Research
Grant Guidelines
STAIR Consortium
Fundraising
Current Studies
SLOS STAIR STUDY – now recruiting!!
Frequent Questions
The Official Smith-Lemli-Opitz | RSH Foundation Website
The 2015 Smith-Lemli-Opitz Family Medical Conference in Portland, Oregon
2015 SLOSF Conference Program
Families and supporters of individuals with Smith-Lemli-Opitz Syndrome are encouraged to register NOW for the SLO Family Medical Conference, taking place from July 31st to August 1st, 2015 at the DoubleTree by Hilton, Portland. Please visit the conference information and registration page and check in at the SLOS Family Facebook page to find out more. We hope to see you there!
About the Foundation:
Smith-Lemli-Opitz | RSH Foundation is a non-profit organization dedicated to supporting families, individuals and professionals dealing with Smith-Lemli-Opitz syndrome. By providing a network of ongoing communication, funding related research, and raising awareness, we are committed to enhancing the quality of life of affected individuals while improving on current treatment methods and striving towards a cure.
The Smith-Lemli-Opitz | RSH Foundation was created in 1988 to give a group of 37 families with SLO | RSH children a network to exchange experiences and information about SLO | RSH. Since then, the group has grown to more than 200 families in the United States and across the world.
The Foundation, in conjunction with volunteers, set up e-mail groups for families to contact each other informally. This provides immediate support for families to ask questions, share in joyful times and share in grief or frustration. Additionally, the Foundation provides regular newsletters, family support, family contact information, specialist contact information, information about ongoing research, and it sponsors regular national meetings where physicians, scientists, and parents can meet to learn more from each other. Another goal of the Foundation is to raise and provide funds to promote research into treatments and ultimately a cure for SLO | RSH Syndrome.
JOIN THE FOUNDATION TODAY:  $25.00 Lifetime Membership
Lifetime-Registration-Form-2014
Click for information on the SLOS STAIR Research Study 7001 – currently recruiting:  http://rarediseasesnetwork.epi.usf.edu/stair/studies/7001-SLOS.htm
Growth Charts Full Article
SLOS Cookbook:
Thank you to Kate Haas and the Bionutrition Unit at OHSU for allowing the SLO Foundation to include a copy of their SLO Cookbook on our website.
2013.06.11 SLOS Cookbook FINAL copy
Newsletters
Events Calendar
Upcoming Events
2015 Smith-Lemli-Opitz Family Medical Conference – Portland, OR on July 31, 2015
Meet more of our families!
Web Design by Eager Mondays
© 1988 - 2012 Smith-Lemli-Opitz / RSH Foundation