Hi, My name is Niamh and I’m 17, from West Yorkshire. I started wearing wigs when I was 16. I was born with a skin disorder called ectodermal dysplasia (Hay Wells syndrome) causing alopecia. I have two wigs currently. I cannot explain how amazing these wigs make me feel. They have boosted my confidence dramatically. I am…
Autumn is for Advocacy
Our families made a significant impact on Ectodermal Dysplasias Advocacy Day! We need everyone in our community to meet with their legislators. We give step by step directions. Ask them to support future legislation which will provide insurance benefits for dental care for all ectodermal dysplasias.
A Cause Worth Fighting For!
Jeanne Wang wanted to give back to the organization that helped her when her son was diagnosed with a rare syndrome called EEC. She quickly found that education and raising awareness empowered her!
Families Educate Medical Professionals
Educating medical professionals about ectodermal dysplasia is an important part of our NFED mission. Families played a critical role by volunteering to share their stories and describe the how the rare condition affects them at a Grand Rounds in Fairfax, Va.
First Advocacy Day Was a Landmark in NFED History
Our first Ectodermal Dysplasias Advocacy Day was an extraordinary moment in the history NFED. 175 people stormed Capitol Hill to educate our Congress.
Our Powerful Week of Education
Amazing! Wonderful! Informative! Fantastic! Life-Changing! Educational Empowering! Fun! Fascinating! What word best describes our week in Washington D.C.? They all do! For me, it is hard to really describe the impact that week made on our entire community.
How I Replaced the Lonely Feeling With Hope
Briana Pinon felt incredibly alone when her baby was diagnosed with ectodermal dysplasia. That all changed when she connected with the National Foundation for Ectodermal Dysplasias. This mom talks about finding resources, connecting with other families and teaching her son about his condition.
Genetic Carriers: How to Tell Your Partner
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.