cdkl5.com
Home - CDKL5 | CDKL5Hope • Love • Cure
http://www.cdkl5.com/
Hope • Love • Cure
http://www.cdkl5.com/
TODAY'S RATING
>1,000,000
Date Range
HIGHEST TRAFFIC ON
Monday
LOAD TIME
1.6 seconds
16x16
32x32
International Foundation For CDKL5 Research
P.O.●●●● 926
Wad●●●rth , OH, 44281
US
View this contact
International Foundation For CDKL5 Research
International Foundation For CDKL5 Research
P.O.●●●● 926
Wad●●●rth , OH, 44281
US
View this contact
International Foundation For CDKL5 Research
International Foundation For CDKL5 Research
P.O.●●●● 926
Wad●●●rth , OH, 44281
US
View this contact
BUY YOUR DOMAIN
15
YEARS
8
MONTHS
2
DAYS
NETWORK SOLUTIONS, LLC.
WHOIS : whois.networksolutions.com
REFERRED : http://networksolutions.com
PAGES IN
THIS WEBSITE
20
SSL
EXTERNAL LINKS
263
SITE IP
52.206.214.15
LOAD TIME
1.625 sec
SCORE
6.2
Home - CDKL5 | CDKL5 | cdkl5.com Reviews
https://cdkl5.com
Hope • Love • Cure
cdkl5.com
Advocacy
https://www.cdkl5.com/Advocacy/Default.aspx
Dedicated to finding a cure for children affected by CDKL5. Research Grants and Updates. Roadmap to a Cure. CDKL5 International Registry Database. CDKL5 Centers Of Excellence. The beginnings of CDKL5. 2nd Annual Toasting Tanner. IPS Disease Modeling and Drug Development in CDKL5. Dr Muotri will attend the IFCR Science Symposium to be held in the Chicago, IL, area in June. He has . Learn More. What does it mean to be an advocate for my child? You are stronger than you know! Don’t be afraid to ask fo...
IFCR to Participate in Rare Disease Day 2015 | International Foundation for CDKL5 Research News
https://www.cdkl5.com/News-Events/news.aspx?id=46
Dedicated to finding a cure for children affected by CDKL5. Research Grants and Updates. Roadmap to a Cure. CDKL5 International Registry Database. CDKL5 Centers Of Excellence. The beginnings of CDKL5. 2nd Annual Toasting Tanner. IPS Disease Modeling and Drug Development in CDKL5. Dr Muotri will attend the IFCR Science Symposium to be held in the Chicago, IL, area in June. He has . Learn More. IFCR to Participate in Rare Disease Day 2015. According to www.rarediseaseday.us. The IFCR is excited to be a par...
In Kind Donations
https://www.cdkl5.com/Get-Involved/In-Kind-Donations.aspx
Dedicated to finding a cure for children affected by CDKL5. Research Grants and Updates. Roadmap to a Cure. CDKL5 International Registry Database. CDKL5 Centers Of Excellence. Raquo; In Kind Donations. The beginnings of CDKL5. 2nd Annual Toasting Tanner. IPS Disease Modeling and Drug Development in CDKL5. Dr Muotri will attend the IFCR Science Symposium to be held in the Chicago, IL, area in June. He has . Learn More. Postage – to assist the IFCR in mailings. Office Depot or Staples gift cards.
Medical Advocacy
https://www.cdkl5.com/Advocacy/Medical.aspx
Dedicated to finding a cure for children affected by CDKL5. Research Grants and Updates. Roadmap to a Cure. CDKL5 International Registry Database. CDKL5 Centers Of Excellence. The beginnings of CDKL5. 2nd Annual Toasting Tanner. IPS Disease Modeling and Drug Development in CDKL5. Dr Muotri will attend the IFCR Science Symposium to be held in the Chicago, IL, area in June. He has . Learn More. Medical Specialists and Palliative Care. In the United States of America and in Europe, palliative care is a mult...
CDKL5 Event: Dance for the Cure
https://www.cdkl5.com/News-Events/event.aspx?id=86
Dedicated to finding a cure for children affected by CDKL5. Research Grants and Updates. Roadmap to a Cure. CDKL5 International Registry Database. CDKL5 Centers Of Excellence. The beginnings of CDKL5. 2nd Annual Toasting Tanner. IPS Disease Modeling and Drug Development in CDKL5. Dr Muotri will attend the IFCR Science Symposium to be held in the Chicago, IL, area in June. He has . Learn More. Dance for the Cure. Cliff's Amusement Park in Albuquerque, NM.
TOTAL PAGES IN THIS WEBSITE
20
CDKL5, Amber and Us: December 2011
http://cdkl5amberandus.blogspot.com/2011_12_01_archive.html
CDKL5, Amber and Us. There is nothing that can prepare you for having a child with a disability and there is nothing that can prepare you for having a child with CDKL5. Friday, 16 December 2011. I haven’t posted in a couple of weeks! Amber had her 7 day heart monitoring and we haven’t heard anything as yet, although we had the clinic letter which I would say has sent the shivers through me to say the least. She is up and down health wise, and it really is a mystery. I mean I blame Disney! Amber and I wil...
CDKL5, Amber and Us: Making "Strides"
http://cdkl5amberandus.blogspot.com/2012/02/making-strides.html
CDKL5, Amber and Us. There is nothing that can prepare you for having a child with a disability and there is nothing that can prepare you for having a child with CDKL5. Sunday, 26 February 2012. A lot has happened since my last post. Time I thought I would write one, something else cropped up and I thought I would wait! He also conducts a lot of research, and I hope he will find the features of CDKL5 interesting, it is very likely that he will not have met a child with CDKL5. The stress of trying to get ...
Kiera's Road with CDKL-5: April 5, 2011
http://cdklklc5.blogspot.com/2011/04/april-5-2011.html
Kiera's Road with CDKL-5 I am writing this blog as a journal, but also to bring awarness to this rare disorder. Thank you for reading! Tuesday, April 5, 2011. April 5, 2011. We are so happy that Kiera's. Doctor came back and called to talk about taking Kiera. It's one of those meds. That the side effects would be more risky than the condition itself. Seizures are up again and she is requiring. More rescue medications over the last few weeks, even today she has used up her allowed dosage. Is reclined a bi...
CDKL5, Amber and Us: CDKL5 UK Launch!
http://cdkl5amberandus.blogspot.com/2011/11/cdkl5-uk-launch.html
CDKL5, Amber and Us. There is nothing that can prepare you for having a child with a disability and there is nothing that can prepare you for having a child with CDKL5. Friday, 18 November 2011. Last Saturday I had the honour and privilege to launch CDKL5 UK at the Rett UK Family Weekend in Northampton. Also I was able to launch CDKL5 UK along with Sarah, my co-parent in this endeavour. CDKL5 UK is so lucky to have such a special band of parents that are dedicated in uniting together for a common cause, ...
cdkl5 - Links
http://cdkl5.de.tl/Links.htm
Https:/ interrett.ichr.uwa.edu.au/ index german.php. Http:/ www.cdkl5.com/. Http:/ www.rett.de/. Http:/ uk.groups.yahoo.com/group/CDKL5/. Http:/ glue.yahoo.com/page/cdkl5. Http:/ www.cdkl5info.blogspot.com/. Fragen und Antworten über CDKL5 auf Englisch). Http:/ www.rehakids.de/phpBB2/intro.html. Http:/ www.drk-epilepsiezentrum.de/. Http:/ chromosomenkinder.parlaris.com/. Es waren schon 30806 Besucher (69088 Hits) hier! Willst du auch eine kostenlose Homepage?
Kiera's Road with CDKL-5
http://cdklklc5.blogspot.com/2011/04/its-strange-how-some-things-and-or-days.html
Kiera's Road with CDKL-5 I am writing this blog as a journal, but also to bring awarness to this rare disorder. Thank you for reading! Thursday, April 21, 2011. It's strange how some things, and or days hit you. People will ask about Kiera, its usually "How is she doing? Many people call these families their CDKL-5 family, I understand that so well. Subscribe to: Post Comments (Atom). This is my story about a CDKL-5 deletion (Xp22.13) and how it affects my daughter. Welcome, and thank you for reading.
Kiera's Road with CDKL-5: Well, it couldn't last forever....
http://cdklklc5.blogspot.com/2012/02/well-it-couldnt-last-forever.html
Kiera's Road with CDKL-5 I am writing this blog as a journal, but also to bring awarness to this rare disorder. Thank you for reading! Monday, February 27, 2012. Well, it couldn't last forever. Ended up vomiting last Tues and aspirated. Her O2 dropped. But has not vomited again and now we are just watching for dehydration. We were able to keep her out of the hospital and get her back to good health at home! Subscribe to: Post Comments (Atom). Welcome, and thank you for reading. Now in the ER.
Kiera's Road with CDKL-5: April 2011
http://cdklklc5.blogspot.com/2011_04_01_archive.html
Kiera's Road with CDKL-5 I am writing this blog as a journal, but also to bring awarness to this rare disorder. Thank you for reading! Monday, April 25, 2011. The test that Kiera. Had to see if she had a Protein losing Disease came back negative. That is great news, and with starting Beneprotein. Her levels are back in normal. Range It is still not clear as to why she was so low for so long but sometimes you just have to be happy with what's in front. Of you at that moment. The edema that Kiera. We are g...
CDKL5, Amber and Us: February 2012
http://cdkl5amberandus.blogspot.com/2012_02_01_archive.html
CDKL5, Amber and Us. There is nothing that can prepare you for having a child with a disability and there is nothing that can prepare you for having a child with CDKL5. Sunday, 26 February 2012. A lot has happened since my last post. Time I thought I would write one, something else cropped up and I thought I would wait! He also conducts a lot of research, and I hope he will find the features of CDKL5 interesting, it is very likely that he will not have met a child with CDKL5. The stress of trying to get ...
Kiera's Road with CDKL-5: March 2014
http://cdklklc5.blogspot.com/2014_03_01_archive.html
Kiera's Road with CDKL-5 I am writing this blog as a journal, but also to bring awarness to this rare disorder. Thank you for reading! Tuesday, March 25, 2014. I haven't updated for a few years but I plan to do that very soon. We have had some life changing events with Kiera and her health over the past year and I want to get everything right when I post next. Subscribe to: Posts (Atom). This is my story about a CDKL-5 deletion (Xp22.13) and how it affects my daughter. Welcome, and thank you for reading.
TOTAL LINKS TO THIS WEBSITE
263
四川科蓝科技有限公司
古河S178光纤熔接机 享誉全球新一代古河光纤熔接机，是光纤接入网及长途干线熔接的最佳选择 他具有坚固. 详情. 公司地址 四川省成都市武侯区桐梓林北路2号 凯莱帝景花园A座19楼E 邮编 610041. 业务传真 028-85924112 客服热线 028-85924112 业务咨询. 2012 By cdkl.net.
成都私家侦探,成都私人侦探,成都婚外情调查,成都侦探公司,成都柯蓝私家侦探为您提供专业服务！
CDKL5 Austria
IBAN AT 54 2011 1890 8909 9299. Hinweis: Diese Spende ist absetzbar.). Weitere Informationen zur CDKL5-Genmutation:. CDKL5 UK (auf Englisch). 2017 CDKL5 Austria Von www.web-seitenmanager.de.
cdkl5.childhealthresearch.org.au
International CDKL5 Disorder Database Initial Family Questionnaire
CDKL5 Disorder Database Homepage. International CDKL5 Disorder Database. The International CDKL5 Disorder Database was established in 2012 by researchers from the Telethon Institute for Child Health Research, Perth, Western Australia in conjunction with the International Foundation for CDKL5 Research. The topics covered and questions asked were established through examination of the current literature and in consultation with a consumer reference group made up of families located in Australia, the United...
Home - CDKL5 | CDKL5
Scientific Director & Advisory Board. CDKL5 Organizations Around the World. Policies & Procedures. Scientific Director & Advisory Board. CDKL5 Centers Of Excellence. Roadmap to a Cure. Clinical Research and Trials. CDKL5 Research Times Newsletter. CDKL5 Centers Of Excellence. Resources & Support. CDKL5 Voices Family Newsletter. Leaving a Legacy Organ & Tissue Donation. More Ways to Be Involved. 4th International CDKL5 Family Conference. This free event will take place June 29-30, 2018 in Denver, Colorado.
CDKL5 - Startseite -
Pflege- & Hilfsmittel. Pflege- & Hilfsmittel. Wir CDKL5-Kinder sind alle ganz verschieden. Unsere Geschwister sind große Klasse! 9-monatiges Kind mit CDKL5-Diagnose. CDKL5 – Startseite. Pflege and Medizinische Versorgung. Soziales and Alltag bei CDKL5. 2 Familientreffen in Berlin! CDKL5 – Startseite. Pflege- & Hilfsmittel. Unglaublich aber wahr: 720 000 Dollar für die CDKL5-Forschung in 2015! Folien zum Webinar “CVI” bei CDKL5 (kortikale Sehbeeinträchtigungen bei CDKL5). 2015 by CDKL5.de.
cdkl5 - Willkommen
Es kommt darauf an sich von anderen zu unterscheiden;ein Engel im Himmel fällt niemanden auf. Es gibt einige Menschen, die mit einem Gendefekt auf die Welt kommen. So ein Gendefekt ist ein (manchmal) klitzekleiner Fehler der Natur - mit großen Auswirkungen. Das atypische Rett-Syndrom (Mutation im CDKL5 Gen). Ist ein solcher Gen-Defekt. Diese Seite soll informieren und aufklären, aber auch Hoffnung machen. Wir möchten Thedas Geschichte gerne erzählen. Für die Nutzer von Facebook.
CDKL5 - www.cdkl5.dk
Det handler om CDKL5. Første CDKL5-træf - juni 2011. Første CDKL5-træf - juni 2011. På denne hjemmeside finder du information om konsekvenserne af mutation i CDKL5 genet (tidligt debuterende Rett Syndrom eller atypisk Rett Syndrom). Hjemmesiden henvender sig til forældre og pårørende til børn med CDKL5. Det er endvidere håbet, at også fagfolk, som har kontakt til personer med CDKL5, vil have glæde af hjemmesiden. Del siden på Facebook.
Untitled Document
CDKL5 Nederland, info over het CDKL5-syndroom | CDKL5 Nederland
CDKL5 Nederland is een ‘niet geregistreerde vereniging’ van Nederlandse gezinnen met kinderen met het CDKL5-syndroom. CDKL5 staat voor het Cyclin-Dependent Kinase-Like 5 gen. Een afwijking op dit gen is lastig te behandelen, vooral de bijbehorende epilepsie. Heb je een algemene vraag over de CDKL5 Nederland, een vraag over de jaarlijkse bijeenkomst in Zwolle, of wil je ons op de één of andere manier ondersteunen, neem dan contact op met Pam, pam@cdkl5.nl.
SOCIAL ENGAGEMENT