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…
While a clinical diagnosis for ectodermal dysplasia is helpful in treating and understanding your condition, it’s also subjective. In many cases, genetic testing can help to confirm your doctor’s suspicions by looking for changes in your genes that cause medical issues like ectodermal dysplasias. We’ve covered some frequently asked questions that we hear about genetic…
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.
Sporting blue, families take to social media to celebrate their loved ones affected by ectodermal dysplasia.
2020 was a year full of challenges, but the NFED excelled in many ways. We brought hope into reality.