Thank you for coming to our site to learn more about ectodermal dysplasias. We know that many health care professionals may see few, if any, patients with ectodermal dysplasia because of the rarity of these syndromes. In addition, ectodermal dysplasia diagnosis and care management can be complicated by the variability of clinical presentation across many…
While there is little published about respiratory problems in ectodermal dysplasias, there is evidence to suggest an increased risk. Learn about the risks, potential causes and recommendations for prevention and treatment.
Are individuals affected by ectodermal dysplasias at increased risk for respiratory problems? Our families often ask this question. In this article, Dr. Timothy J. Fete has the answer. He shares findings from numerous research studies over the years that investigated different types of ectodermal dysplasias and the respiratory issues affected individuals reported. Learn what causes…
The National Foundation for Ectodermal Dysplasias (NFED) is making some noise in the world of ectodermal dysplasias! We are shaping the future, with new research studies and breakthrough treatments that are already changing lives. You are such an important partner as we follow this path of breakthrough treatments and potential cures.
2020 was filled with unprecedented global, health, economic and social challenges. That makes it doubly important that we all pause and look back on some of the great things that we’ve accomplished…with you at our side.
While the skin, hair, teeth, nails and sweat glands are the primary body parts affected by ectodermal dysplasias, the hands and feet can also be impacted. Learn about two of subtypes of ectodermal dysplasias which include these limb abnormalities: ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome and ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. These syndromes both involve…
Cleft lip and cleft palate are common birth abnormalities in the general population. Dr. Dana Jackson shares statistics of how many are affected and within races. Cleft lip and cleft palate is a key feature in two different types of ectodermal dysplasias: ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome and ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. In…
It’s extraordinary what our advocates and staff have accomplished in just two months since the Ensuring Lasting Smiles Act (ELSA) (S.754/H.R.1916) was re-introduced in the 117th Congress! Our brave advocates shared their struggles on our Virtual Advocacy Day on Capitol Hill. Find out what’s happened with ELSA since they shared their stories.