Ectodermal Dysplasia Archive

Mary Kaye Richter Speaks at Launch of Mexican Association of Ectodermal Dysplasias NFED’s executive director, Mary K. Richter, spoke at the launch of Mexican Association of Ectodermal Dysplasias “Mariana” (Asociacion Mexicana de Displasia Ectodermica) on April 30th in Toluca, Mexico. She wished the organization well and gave some advice

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  What is NEMO?By Jordan Orange, MD, PhD Mutation of the gene called NEMO can be a serious cause of primary immunodefi ciency. NEMO stands for the “nuclear factor of kappa light polypeptide gene enhancer in B cells essential modulator.” It is more commonly called the “NF- B essential

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 WHO IS JACK? By Roy and Charlotte Hagelin At the 2007 IDF National Conference, when Carol Ann Demaret and Dr. Jordan Orange dedicated their comments to the memory of “Jack” the question on many minds was “Who is Jack?” We are Roy and Charlotte Hagelin from Fairfi eld, New

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Andy’s “radiator” doesnt work. We’ve never seen him sweat (ectodermal dysplasia),    

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I received this message today from the NFED. The National Foundation for Ectodermal Dysplasias has learned of a little boy affected by Hypohidrotic Ectodermal Dysplasia who is looking for a forever family. Alex is 5 years old and has been in a China orphanage since he was 3 years

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Dr. Orange’s article published back in June 2002 at the Journal of Clinical Investigation has been cited twenty eight times according to Google Scholar. The title of the article was Deficient natural killer cell cytotoxicity in patients with IKK-gamma/NEMO mutations. Andy’s cells were used for that article. Find all

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Subscribe to the Andy Blog and receive an email notifications to alert you of a new post. When you subscribe you will receive email notification alerts when any of the categories at The Andy Blog is updated. The Andy Blog has the following categories, Andy’s Update – News about

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I’m writing a book! Paulina remembers more things than I do, she has a better memory(among lots of other things). I constantly go to Paulina with questions looking for more details so when I say ‘I” it really means ‘We’. I (we) started to write formally around February 23rd.

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Here’s what experts suggest to help keep kids cool: – Increase fluids. As a result of their smaller sizes and lesser ability to sweat, kids are more susceptible to dehydration and heat illness than adults. – Lighten up the wardrobe. Make sure garments are loose-fitting and light-colored to reflect,

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