Liam is a happy little guy whose smile lights up the room – and your heart. Like most 11-month-olds, he drools constantly and often has a runny nose. Unlike most kiddos his age, that saliva and mucous is a welcome surprise for his parents.
Additional Information on Newborn XLHED Clinical Trial: XHLED Family in EU Needed for “Trial to Cure” Project
I want to share with you additional information as a follow-up to our announcement on Wednesday, January 6thabout the Newborn X-Linked Hypohidrotic Ectodermal Dysplasias (XLHED) Clinical Trial.
CRITICAL UPDATE: NEWBORN XLHED CLINICAL TRIAL
I want to share with you, our families, donors and friends, the latest developments regarding the Newborn X-Linked Hypohidrotic Ectodermal Dysplasia (XLHED) Clinical Trial being conducted by Edimer Pharmaceuticals. It has now been two years and three months since the first baby boy affected by XLHED received EDI200, a recombinant protein to replace the one…
Howdy!
By Susan Hamm I’ve always been the type of person to volunteer for projects or causes I was passionate about and the NFED was no different. I attended my first Family Conference and came home with an overwhelming amount of information on this syndrome that I had barely learned to pronounce. After processing what I…
Why You Should Care About the XLHED Research Study
By Mary K. Richter NFED Founder People often ask me what I think of the research underway using a protein replacement to minimize the effects of hypohidrotic ectodermal dysplasia. At this point in my life, I realize that my response would change dependent upon the stage of life in which I or my son was….