I am excited to share with you the latest news in our journey to develop a treatment for x-linked hypohidrotic ectodermal dysplasia (XLHED). EspeRare, a not-for-profit drug developer based in Switzerland, is picking up where Edimer Pharmaceuticals left off! EspeRare is exploring the possibility of re-launching the development of ER-004 (formerly known as EDI200) as…
Inability to sweat doesn’t keep area man from farming or playing with kids
Charlie Richter was a poster child for the National Foundation for Ectodermal Dysplasia in the 1980s, with his pale skin, bald head, flat nose and kid-size dentures. What the images didn’t show was the most serious symptom of his genetic disorder: The inability to sweat.
Advocacy
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…
Maverick’s Story With HED
Roy and Leslie welcomed their fourth child and first son Maverick in 2009. From the beginning, he had signs that made him different than their other three children. He was sensitive to the sunlight where they lived in Texas and only wanted to go outside at night. When Maverick finally developed a few teeth and…
Success: The Best Kind of Revenge
by Patrick Brenner High school is rough. With pressure from your peers to fit in, with pressure from your parents to behave, with pressure from the school to study hard, it’s a miracle any of us made it out alive. Some of us had an exceptionally difficult experience. I consider myself one of those. Back…
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 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…