The National Foundation for Ectodermal Dysplasias, just 25 years ago, began supporting research. The research was to identify the genes which cause the 180+ ectodermal dysplasias. Those efforts have paid off. We know many of the causative genes for many of these conditions, but not all. We still have lots of work to do! One of…
Volunteers Needed For A New NIH Study For Craniofacial Anomalies
Doctors at the National Institutes of Health (NIH) are conducting a study that will identify the conditions of craniofacial abnormalities, including ectodermal dysplasias, in an effort to develop treatments specific to the type of the condition. The research team invites volunteers with the condition, their family members, and healthy volunteers to participate.
Diagnosing Ectodermal Dysplasia Syndromes in Babies
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…
2016: Our Year in Review
When I look back over 2016, it brings a smile to my face when I see what we, the National Foundation for Ectodermal Dysplasias (NFED) family, have accomplished. We have truly been blessed with a wonderful year. You helped us accomplish many goals. We are truly grateful that each of you are a part of our family.
Happy Holidays!
Wishing you and yours all the beauty of this magical holiday season. We wanted to share with you in this video some of the magical people that we get to help all year long. Happy holidays from all of us at the National Foundation for Ectodermal Dysplasias!
Volunteers Give Forty Years of Board Service
This month, we thank four volunteers for their years of service and dedication to our Board of Directors (BOD). Three of them have served 10 or more years. They helped lead the National Foundation for Ectodermal Dysplasias (NFED) through the transition after our founder, Mary K. Richter, retired in 2010. Serving on a Board requires…
Get Baking With Cookies for a Cure
Love cookies? (Who doesn’t?) Want to support the National Foundation for Ectodermal Dysplasias (NFED) and spread awareness for ectodermal dysplasias? We have the perfect fundraising opportunity for you — cookies for a cure.
Ten Reasons to Give Before December 31st
10. GIVING TO THE NFED IS CONVENIENT You can give online, by calling Brittany at (618) 566-6874, or by sending in a check to: NFED, 6 Executive Drive, Suite 2, Fairview Heights, IL 62208-1360. The most convenient and sustainable donation you can make is by becoming a monthly contributor through our Smile Makers program. Simply…