By Nancy Jane Johnson I’d like you to meet Ethan Noble. He lives in Ellensburg, a small college town in the middle of Wash. which has quite distinctive seasons, snow in winter, 100+ degrees for a short time in summer and lots of wind! Ethan was born in York, Maine and is almost 15. He…
Tips for Finding a Doctor or Dentist
When you have a rare disorder like ectodermal dysplasia, it’s not easy to find a doctor or dentist who has a lot of experience in treating the condition. Some may go their whole career and never see a patient with ectodermal dysplasia. The process can be frustrating and time-consuming for you. Consider working with a…
If You Suspect Ectodermal Dysplasia
We know that you may have found the National Foundation for Ectodermal Dysplasias (NFED) after searching for your own or a loved one’s symptoms. If you suspect you or your loved one is affected by ectodermal dysplasia, the next step is to find a doctor who can formally diagnose you. Find a Doctor Contact…
Volunteer Spotlight
Our office volunteers show up on short notice to fold letters from appeals to special events, to stuff and address thousands of envelopes we mail each year. They relentlessly give of their time and help wherever needed which makes a great difference for our staff. They help with creating silent auction baskets, copying, filing, folding…
An Anniversary Gift for You
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…
A Shot of Courage and Lavender Cooling Mist
By Liz Timmerman Just over a year ago, my youngest daughter, Violet, was diagnosed with hypohidrotic ectodermal dysplasia at the age of one year old. The first year of her life was filled with many challenges and I was seriously starting to doubt my abilities as a mother because my baby was always so unhappy, couldn’t…
Spot the Difference?
Mary Emma Roberts is now 12 inches of hair lighter! Mary Emma is six years old, but she began donating her hair to charities two years ago when she was just four. Already at this age, Mary Emma had eight inches of hair to spare. So, Mom, Kara Roberts, decided the time had come to…
Genetic Counseling Helps Make Sense of Ectodermal Dysplasia
If you or your loved one recently received an ectodermal dysplasia diagnosis, you may have more questions than answers at first. How did this happen? Can our future children have it? Should I have other family members tested? All of your questions are valid ones and normal to have following a diagnosis. The specialist best…