Andrew James’ first year of life was traumatic, requiring many ER visits for unknown reasons.
When his parents finally had a reason for their baby boy’s health challenges, ectodermal dysplasia, they turned to the NFED for support.
The NFED is proud to have supported the James family and other families like them for 40 years!
Genetic carriers or people with ectodermal dysplasias will have to tell their partner at some point when things get serious. Here are some tips to help you.
When it comes to understanding and diagnosing ectodermal dysplasia syndromes in children, parents play a crucial role. These genetic disorders affect 1 in 10,000 births. Some symptoms can be identified during pregnancy or at birth (especially if there is a family history), many only become noticeable during later stages of growth and development, like when…
Let’s do something good for the NFED community. Be a part of the growing global #GivingTuesday movement. The Bill and Melinda Gates Foundation will match up to $1,000 per each Facebook fundraiser page for the first $500,000
By Nancy Nelsen, Guest Blogger We attended the National Foundation for Ectodermal Dysplasias (NFED) Family Conference during the summer of 2015 in Colorado Springs. Neither of us, my husband, Karl and I, were prepared for the emotions that filled us as we listened to other families’ stories, and told our own. We felt supported, connected…
As you know, in 2016 the National Foundation for Ectodermal Dysplasias (NFED) community is celebrating our 35 anniversary! This year, we celebrate 35 years of NFED success. Over the years we have added tremendously to the body of knowledge of ectodermal dysplasias, made great strides in treatment and have had tremendous research successes. Thirty-five years…
It is a good idea for you to keep your medical information in a personal file. People tend to change physicians more frequently as jobs and insurances change. You may choose to enter medical or dental information in a laptop, or keep hard copies in a notebook or binder. Dating all of your entries will…
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…