网站综合信息 littlemisshannah.com
- 标题:
- Little Miss Hannah - Fight against Neu
- 关键字:
- gaucher's disease gaucher's disease type 2 gaucher's
- 描述:
- Hannah Ostrea's journey and fight against neuronopathic Gaucher's disease, an extremely ra
- 域名信息
- 域名年龄:15年4个月25天 注册日期:2008年12月23日 到期时间:2013年12月23日
注册商:GODADDY.COM, LLC
- 服务器空间
- IP:72.167.232.152 同IP网站21个 详情
地址:美国 亚利桑那州斯科茨代尔市Go Daddy集团公司
- 备案信息
- 备案号:-
域名流量Alexa排名
域名注册Whois信息
littlemisshannah.com
域名年龄: 15年4个月25天注册时间: 2008-12-23
到期时间: 2013-12-23
注 册 商: GODADDY.COM, LLC
获取时间: 2013年02月28日 20:12:08
Domain Name: LITTLEMISSHANNAH.COM
Registrar: GODADDY.COM, LLC
Whois Server: whois.godaddy.com
Referral URL: http://registrar.godaddy.com
Name Server: NS61.DOMAINCONTROL.COM
Name Server: NS62.DOMAINCONTROL.COM
Status: clientDeleteProhibited
Status: clientRenewProhibited
Status: clientTransferProhibited
Status: clientUpdateProhibited
Updated Date: 2011-11-25
Creation Date: 2008-12-23
Expiration Date: 2013-12-23
>>> Last update of whois database: Thu, 2013-Feb-28 12:11:42 UTC <<<
Registered through: GoDaddy.com, LLC (http://www.godaddy.com)
Domain Name: LITTLEMISSHANNAH.COM
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网站头文件(HTTP Header)
HTTP/1.1 200 OK 访问时间:2013年02月28日 20:12:12 X-Pingback: http://littlemisshannah.com/xmlrpc.php 缓存控制:no-store, 不缓存,必须更新, post-check=0, pre-check=0 其他指令:不缓存 修改日期:2013年02月28日 19:55:13 Transfer-Encoding: chunked 类型:text/html; charset=UTF-8 网站编码:UTF-8
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抓取时间:2013年02月28日 20:12:07
网址:http://littlemisshannah.com/
标题:Little Miss Hannah - Fight against Neuronopathic Gaucher
关键字:gaucher's disease, gaucher's disease type 2, gaucher's disease type 3, rare disease, childhood rare disea
描述:Hannah Ostrea's journey and fight against neuronopathic Gaucher's disease, an extremely rare and fatal life-limiting genetic metabolic disease. As a result of raising a medically fragile c
主体:
网址:http://littlemisshannah.com/
标题:Little Miss Hannah - Fight against Neuronopathic Gaucher
关键字:gaucher's disease, gaucher's disease type 2, gaucher's disease type 3, rare disease, childhood rare disea
描述:Hannah Ostrea's journey and fight against neuronopathic Gaucher's disease, an extremely rare and fatal life-limiting genetic metabolic disease. As a result of raising a medically fragile c
主体:
Little Miss HannahOur Fight against Gaucher's Disease type 2 or 3Home Meet Hannah Hannah’s Foundation In The News Gaucher’s 2/3 If you have a child with GD23 GD23 Facts GD23 Resources GD23 Physicians GD23 Research & News How to Help! donate volunteer Contact @LMHF on TwitterSurviving Hannah’s Fight LMH Foundation Gaucher’s Disease Rare Disease Pics and Videos Little Miss Hannah Foundation is Heading to Washington D.C. to Advocate for Childhood Rare Disease Awareness 25 Feb by Carrie Written by Robert Ostrea Daddy and our Little Miss Hannah This year, I will be representing the Little Miss Hannah Foundation at the Legislative Conference & Lobby Day, organized by the Rare Disease Legislative Advocates (RDLA), located in Washington, D.C. This will be a fantastic opportunity to join forces with other rare disease groups and parent advocates to meet with members of Congress to educate legislators on the importance of continued and increased funding for various rare disease research. We will be in Washington during a particularly politically tumultuous time as the “sequestration” is scheduled to kick in on March 1st. Sequestration refers to mandatory, across-the-board cuts affecting every aspect of government. This provision was put in place in the event the various branches of government do not agree on a formal budget. At stake are potential cuts to crucial research funding initiatives headed by the National Institutes of Health (NIH) and the Food & Drug Administration (FDA). Our goal as activists will be to urge our legislators to implement legislation which will protect or increase funding for this needed research. My personal goal is to create relationships with key staff members and with other patient groups to continue the conversation and keep rare disease awareness in the minds of our representatives. In addition to the Lobby Day, other activities, workshops and World Rare Disease Day events are planned in the DC area. It should be a very interesting, educating and enlightening experience which I will describe in a daily blog next week! Leave a Comment ~ Filed Under: LMH Foundation Scentsy Fundraiser for Little Miss Hannah Foundation 17 Feb by Carrie Marie-Luise Smith, the generous woman who donated 20 Scentsy buddies to our organization last month, is hosting a Scentsy Party for our Little Miss Hannah Foundation! She has offered to donate her entire commission to our organization for each purchase at our LMHF Party. Order here! The money raised through this fundraiser will go directly to funding our Medical and Therapy Equipment Grant, a program designed to help provide medical and comfort care items to medically fragile children to enhance their quality of life. If you would like to purchase an item to be to be given as a special gift to one of our LMHF families, please use the following shipping address: Little Miss Hannah Foundation 10624 S. Eastern Avenue, #A847 Henderson, NV 89052 Leave a Commen
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