Did you know that ectodermal dysplasia can affect breast development in both females and males? Learn how and why it’s related to sweat glands in this new library article. Find out about the various ways breasts can be affected, potential treatment options and how to discuss the issue if your child is affected.
Hypohidrosis and How to Chill Out in the Car
Does hypohidrosis make you want to stay inside? Learn what to do to keep loved ones who can’t sweat cool this summer while they are riding in the back seat of a car.
Giraffes to Genes: Alexander’s Story
Alex’s story started out just like any other story. The perfect little baby who fed well, was always normal on the growth charts and in general was a happy baby! We were also happy that he had the perfect little shaped head to be bald. You see, we did not know at the time that his extended baldness had anything to do with a rare genetic disorder, so we always joked it was a good thing his little baby head was shaped so perfectly.
Prenatal Treatment Restores Sweating in XLHED
Dr. Schneider and his team of investigators have published their groundbreaking research results in a “Prenatal Correction of X-Linked Hypohidrotic Ectodermal Dysplasia.” We are thrilled to share with you key highlights from their research, what it means for our families affected by XLHED, and the next steps.
Dear Santa
We know that you have been good this year so we wrote our own letter to Santa on behalf of you and all families affected by ectodermal dysplasias.
This Is Not Some Hollywood Smile Issue
A Canadian mother trusted her instincts and had her son genetically tested when he didn’t develop all of his teeth. Their journey led to a diagnosis of odontoonychodermal dysplasia, a rare type of ectodermal dysplasia. It also explained symptoms for other family members. Read what Jamie Critchell is determined she must do now.
Are Dental Implants Appropriate for Kids?
Understand the importance of age appropriate, medically necessary ectodermal dysplasia treatment.
Four Research Opportunities at the National Family Conference
Families attending the 2012 National Family Conference in Orlando, July 18-21, have the opportunity to volunteer for the four projects listed below. To participate, sign-up on the 2012 national family conference registration form. You will receive your assigned research times when you check-in at registration on Wednesday, July 18th at the conference. Questions? Email Mary…