ulf.org
United Leukodystrophy FoundationUnited Leukodystrophy FoundationOur Mission: The United Leukodystrophy Foundation serves individuals and families affected by leukodystrophy by exchanging information and promoting
http://www.ulf.org/
Our Mission: The United Leukodystrophy Foundation serves individuals and families affected by leukodystrophy by exchanging information and promoting
http://www.ulf.org/
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United Leukodystrophy FoundationUnited Leukodystrophy Foundation | ulf.org Reviews
https://ulf.org
Our Mission: The United Leukodystrophy Foundation serves individuals and families affected by leukodystrophy by exchanging information and promoting
ulf.org
2016 ULF Annual Conference - United Leukodystrophy FoundationUnited Leukodystrophy Foundation
http://ulf.org/conferences
Board of Directors and Staff. Medical and Scientific Advancements. Become a Member or Renew Your Membership. Patients & Family. Become a Member or Renew Your Membership. Become a Member or Renew Your Membership. 2016 ULF Annual Conference. 2016 ULF Annual Conference. 2016 ULF Annual Conference. 2016 ULF Annual Conference. If you missed this opportunity, please plan to join us for the next ULF Family Conference and Scientific Symposium at The Commons Hotel on the campus of the University of Minnesota in M...
Store - United Leukodystrophy FoundationUnited Leukodystrophy Foundation
http://ulf.org/store
Board of Directors and Staff. Medical and Scientific Advancements. Become a Member or Renew Your Membership. Patients & Family. Become a Member or Renew Your Membership. Become a Member or Renew Your Membership. 2016 ULF Annual Conference. 2016 ULF Annual Conference. If you are interested in ordering or inquiring about ULF merchandise, please email us at: office@ulf.org. Become a Member or Renew Your Membership. 2016 ULF Annual Conference. This field is for validation purposes and should be left unchanged.
What is Leukodystrophy - United Leukodystrophy FoundationUnited Leukodystrophy Foundation
http://ulf.org/what-is-leukodystrophy
Board of Directors and Staff. Medical and Scientific Advancements. Become a Member or Renew Your Membership. Patients & Family. Become a Member or Renew Your Membership. Become a Member or Renew Your Membership. 2016 ULF Annual Conference. 2016 ULF Annual Conference. What is the nervous system? The CNS consists of the brain and the spinal cord and contains billions of specialized cells known as neurons. Neurons have projections called dendrites and axons that contribute to their unique function of tr...
Krabbe Disease - United Leukodystrophy FoundationUnited Leukodystrophy Foundation
http://ulf.org/krabbe-disease
Board of Directors and Staff. Medical and Scientific Advancements. Become a Member or Renew Your Membership. Patients & Family. Become a Member or Renew Your Membership. Become a Member or Renew Your Membership. 2016 ULF Annual Conference. 2016 ULF Annual Conference. What Causes Krabbe Disease? What are the symptoms of Krabbe Disease? Optic atrophy: wasting of a muscle of the eye, resulting in vision diffculties. Spasticity: presence of spasms. Ataxia: loss of the ability to control muscular movement.
Aicardi-Goutieres Syndrome - United Leukodystrophy FoundationUnited Leukodystrophy Foundation
http://ulf.org/aicardi-goutieres-syndrome
Board of Directors and Staff. Medical and Scientific Advancements. Become a Member or Renew Your Membership. Patients & Family. Become a Member or Renew Your Membership. Become a Member or Renew Your Membership. 2016 ULF Annual Conference. 2016 ULF Annual Conference. What are the symptoms of Aicardi-Goutieres Syndrome? Microcephaly: abnormally small head. Early progressive encephalopathy: abnormalities of the brain. Lack of progress of motor and social skills; no or very poor contact with surroundings.
TOTAL PAGES IN THIS WEBSITE
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Tulips and Rembrandts: Merry Christmas!
https://msharms.blogspot.com/2013/12/merry-christmas.html
Determined to find beauty in the unfamiliar places. An unintended journey began and continues. God remains faithful through it all. Wednesday, December 25, 2013. Hello Friends and Family,. After such a long season of quiet, the end of 2013 provides a lovely opportunity for a family update! Ruby is thriving in Kindergarten and loves to sing, read, draw, snuggle and is very proud of the calluses on her hands from all the climbing she does on the school playground! Hannah Mae is our little adventurer! She c...
Leukodystrophy & Rare Diseases Resources
http://www.joejohnson.net/leukodystrophy_connections.htm
My son, Joey Johnson, has neonatal adrenoleukodystrophy. ALD) damages the white matter of the brain and impairs the adrenal glands. It stole all of his sight and most of his hearing by the time he was eighteen months old. Joey is 18 years old now. I have found these resources helpful in my journey through the world of Leukodystrophy and Rare Diseases. To reach the resource, click on the title. If you have a resource that should be on the list then please let me know. And other lipid diseases. This site i...
Sean's Web site -- Help-out --
http://www.seanscastle.com/help.html
How Can You Help? A cure for Alexander's Disease is definitely in the future. Possible treatments are also promising but only through continued research. There are two marvelous organizations instrumental in trying to find a cure and potential treatments for Alexander's Disease. First, is the research by Dr. Albee Messing at the University of Wisconsin Madison. To give on-line follow this link: http:/ www.waisman.wisc.edu/alexander/. Then click the link under. ATTN: Dr. Albee Messing. Madison, WI 53705.
Lysosomal Disease Network
http://www.rarediseasesnetwork.org/LDN/index.htm
Rare disease research groups. Stay Connected - Join the Contact Registry. For Researchers and Healthcare Professionals. Conference on Clinical Research for Rare Diseases 2016. Other Rare Disease Initiatives. Spotlight on Rare Diseases Newsletter. What is the RDCRN? Data Management And Coordinating Center (DMCC). About the Lysosomal Disease Network. Alpha-Mannosidosis types I / II. Batten disease, late infantile. Galactosialidosis types I / II. Sialidosis types I / II. Sialuria, Salla disease. A Historica...
Mon psychothérablog: Un peu de pommade ne fait de mal à personne...
http://sborja1.blogspot.com/2009/09/un-peu-de-pommade-ne-fait-de-mal.html
Là où je peux exprimer mes joies, mes peines, parler surtout de l'injustice de la maladie qui touche ma fille,là où je peux maudire les leucodystrophies en toute tranquillité, mais où aussi je peux m'extasier et rire, malgré tout. Mardi 8 septembre 2009. Un peu de pommade ne fait de mal à personne. Surtout quand c'est à soi-même! Voilà longtemps que je souhaitais faire ce pull (à gauche, le devant, à droite le dos), qui est entièrement tricoté SANS COUTURE mesdames et messieurs! C'est sûr, la honte ultime.
Mon psychothérablog: Dictionnaire pour les nuls 2
http://sborja1.blogspot.com/2009/09/dictionnaire-pour-les-nuls-2.html
Là où je peux exprimer mes joies, mes peines, parler surtout de l'injustice de la maladie qui touche ma fille,là où je peux maudire les leucodystrophies en toute tranquillité, mais où aussi je peux m'extasier et rire, malgré tout. Mercredi 2 septembre 2009. Dictionnaire pour les nuls 2. Grâce à François je sais que ce dictionnaire existe :. Http:/ fr.wikipedia.org/wiki/RSS (format. On a déjà des infos sur le RSS (c'est un peu compliqué, mais j'ai compris, je crois, le fond). Francois et fier de l'Être.
Mon psychothérablog: 01 janvier 2006
http://sborja1.blogspot.com/2006_01_01_archive.html
Là où je peux exprimer mes joies, mes peines, parler surtout de l'injustice de la maladie qui touche ma fille,là où je peux maudire les leucodystrophies en toute tranquillité, mais où aussi je peux m'extasier et rire, malgré tout. Samedi 7 janvier 2006. Aujourd'hui, jour de pluie. Et je ne parle pas du temps. Quand je n'ai pas le moral, la blogosphère nous livre quelques "bijoux visuels" plein d'humour et de tendresse. Http:/ ceduniverse.blogspot.com. Et ses bonnes résolutions. Et ses affres créatifs (.
Érase una vez... Noa: Noa de 5 a 7 meses
http://eraseunaveznoa.blogspot.com/p/noa-de-5-7-meses.html
Érase una vez. Noa. Un blog sobre una pequeña y valiente niña y su lucha contra la Leucodistrofia de Krabbe. Noa de 0 a 4 meses. Noa de 5 a 7 meses. Noa de 8 a 10 meses. Noa de 11 a 13 meses. Noa de 14 a 16 meses. La vida después de Noa. I Marcha de Sensibilización de las Leucodistrofias. II Marcha de Sensibilización de las Leucodistrofias. Noa de 5 a 7 meses. A las 10:30 vamos a la revisión con el pediatra. Nos dice que le ve una pierna un poco mas corta y nos deriva al traumatólogo para que la observe.
Érase una vez... Noa: Cumpleaños
http://eraseunaveznoa.blogspot.com/2014/10/cumpleanos.html
Érase una vez. Noa. Un blog sobre una pequeña y valiente niña y su lucha contra la Leucodistrofia de Krabbe. Noa de 0 a 4 meses. Noa de 5 a 7 meses. Noa de 8 a 10 meses. Noa de 11 a 13 meses. Noa de 14 a 16 meses. La vida después de Noa. I Marcha de Sensibilización de las Leucodistrofias. II Marcha de Sensibilización de las Leucodistrofias. Miércoles, 29 de octubre de 2014. Otro cumpleaños que no puedes celebrar. Si pudiera enviarte un abrazo, lo haría, pero solo puedo abrazarte en mi corazón. Apoya a la...
Érase una vez... Noa: Cambio de correo electrónico
http://eraseunaveznoa.blogspot.com/2012/10/cambio-de-correo-electronico.html
Érase una vez. Noa. Un blog sobre una pequeña y valiente niña y su lucha contra la Leucodistrofia de Krabbe. Noa de 0 a 4 meses. Noa de 5 a 7 meses. Noa de 8 a 10 meses. Noa de 11 a 13 meses. Noa de 14 a 16 meses. La vida después de Noa. I Marcha de Sensibilización de las Leucodistrofias. II Marcha de Sensibilización de las Leucodistrofias. Miércoles, 31 de octubre de 2012. Cambio de correo electrónico. Comunico que el correo electrónico de este blog, ha sido secuestrado por google. Os pido a todas las p...
TOTAL LINKS TO THIS WEBSITE
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// Ulf Kunze
Ulf Morys Web ID
Ulf Morys Web ID. Leidenschaftlich führen um Dinge in der digitalen Welt zu bewegen. Leading with passion to get things done in a digital world. Guider avec passion pour faire avancer les choses dans un monde digital. Beitrag nicht abgeschickt - E-Mail Adresse kontrollieren! E-Mail-Überprüfung fehlgeschlagen, bitte versuche es noch einmal. Ihr Blog kann leider keine Beiträge per E-Mail teilen.
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Båtbyggern på Kjerringøy - Ulf Mikalsen
Båtbyggern på Kjerringøy - Ulf Mikalsen. Ferdig tre-og-en-halvroms båt. En halv-fjerde-rømming. Klinking med stor konsentrasjon. Kjerringøy i blankstilla. Ny båt ferdig til bruk. Kjerringøy i vinterdrakt. Velkommen til Båtbyggern på Kjerringøy, Ulf Mikalsen! Her lukter det godt! Jeg tar ikke for sterkt i når jeg påstår at ni av ti som stikker nesen innom båtbyggeriet mitt på Kjerringøy, snuser dypt inn, smiler og utbryter nettopp det; "Her lukter det godt". Det kommer an på hvordan man ser det. Fø...
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United Leukodystrophy FoundationUnited Leukodystrophy Foundation
Medical and Scientific Advancements. Patients & Family. Programs, Events & Fundraisers. Support ULF when you send flowers. Learn all the benefits of becoming a member of our community. There are several ways to donate to the cause. Learn how a give today. Get connected with other patients, families, friends, and caregivers for support. You can give to the foundation by shopping our merchandise. View our most recent newsletter by clicking the following link: Spring-Summer Newsletter. Programs & Events.
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Welcome to the Upper Lachlan Foundation Inc. A new initiative to support our local Community. The Upper Lachlan Foundation (ULF) is a part of the Capital Region Community Foundation, known as GreaterGood. The Upper Lachlan Foundation capital is invested with GreaterGood and the Public Trustee for the ACT and the income funds our future grants program. Upper Lachlan Foundation Inc -. Website Design by Bevendale Marketing. Notice of Annual General Meeting of the. Upper Lachlan Foundation Incorporated.
Наша місія / Українська Локсмайстер Федерація
SALUS REI PUBLICAE - На благо суспільства. Ми працюємо для Вас. Українська Локсмайстер Федерація (УЛФ) – недержавна і некомерційна громадська організація, що об’єднує справжніх професіоналів галузі безпечного замикання та технічного укріплення об'єктів, систем розмежування та автономних систем контролю доступу. До УЛФ входять найпрогресивніші компанії та найкваліфікованіші приватні підприємці, діяльність яких пов’язана з виробництвом, продажем, встановленням та обслуговуванням ...Встановлення систем техн...
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