By Beth Orchard I was told from an early age, I had the disorder, yet I was not diagnosed until my early thirties with x-linked hypohidrotic ectodermal dysplasia (XLHED). Being a young child with differences in my teeth, hair and skin (including lack of sweat glands) made me overly self-conscious. I was picked on and…
Babies With XLHED Treated In Utero
What’s going on with the research for x-linked hypohidrotic ectodermal dysplasia (XLHED) and EDI200? Last January, I announced that Edimer Pharmaceutical’s Newborn XLHED Clinical Trial did not achieve the outcomes which we had hoped for. In that trial, they dosed newborns who were affected by x-linked hypohidrotic ectodermal dysplasia (XLHED) with a protein called ED1200…
Smiling About Snot and Spit
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…
Why I Volunteered to Participate in the Edimer Research Trials
By Beth Orchard My husband and I enrolled our two-month-old son, Liam, in the XLHED Newborn Clinical Trial less than two weeks after he was born. Even before pregnancy I knew about the study and, if we had an affected son, would enroll him. There are many reasons but the greatest one was this: to give…