NEMO Gene Archive

I heard about Giovanni in the news a couple of weeks ago.. And I received an email today from Michael Guglielmo, the father of Baby Giovanni who was just diagnosed with NEMO yesterday. We talked on the phone, he’s looking for information about NEMO, he said he’s had a

Read More...

Go Jacob!! www.cure4treebeard.org Jacob Treebeard Brown was born on August 18, 2003. Shortly after birth he was diagnosed with a very rare genetic condition called Ectodermal Dysplasia with Immunodeficiencies, also referred to as NEMO. For the past three years, Jacob has been receiving daily antibiotic treatments, IVIG therapy and

Read More...

Kevin Harris from Wales, England emailed me last week telling me that his son Rhys has NEMO. I created a website (www.cure4rhys.org) for Rhys. Heres the introduction: Rhys got diagnosed NEMO around about April last year. He has always been back and forth hospital since he was nine months

Read More...

From the Pediatrics Journal, published today: Successful Allogeneic Hemopoietic Stem Cell Transplantation in a Child Who Had Anhidrotic Ectodermal Dysplasia With Immunodeficiency Sophie Dupuis-Girod, MDa,b, Caterina Cancrini, MD, PhDc, Françoise Le Deist , MD, PhDd,1, Paolo Palma, MDc, Christine Bodemer, MDe, Anne Puel, PhDf, Susanna Livadiotti, MDc, Capucine Picard,

Read More...