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We offer numerous programs nfed help you better understand ectodermal dysplasias and to provide the support and assistance you and your family need to live your best lives, nfed.

The National Foundation for Ectodermal Dysplasias NFED , which was established in , is a non-profit service organization committed to being the authoritative resource for information on the ectodermal dysplasia ED syndromes; providing services that meet the physical, emotional, informational, and social needs of affected individuals and their families; and supporting research on the ED syndromes. The foundation provides informational materials and support for families affected by ED syndromes in the United States and around the world. It also provides medical and dental professionals with useful information on early diagnosis and treatment options. Set Valu Keyword Search. About National Foundation for Ectodermal Dysplasias NFED The National Foundation for Ectodermal Dysplasias NFED , which was established in , is a non-profit service organization committed to being the authoritative resource for information on the ectodermal dysplasia ED syndromes; providing services that meet the physical, emotional, informational, and social needs of affected individuals and their families; and supporting research on the ED syndromes. Your Name Required.

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Families affected by ectodermal dysplasias often have trouble paying for necessary dental work that's not covered by insurance companies. Teeth are not cosmetic! We need your help to close a loophole in the law that allows insurance companies to deny necessary medical and dental procedures to those affected by congenital anomalies like ectodermal dysplasias. Our advocacy tool makes it easy to reach out to your legislators and affect change. Take Action. The ectodermal dysplasias are inherited disorders that involve defects in the hair, nails, sweat glands and teeth. When a person has at least two types of abnormal ectodermal features—for example, malformed teeth and extremely sparse hair—the individual is identified as being affected by ectodermal dysplasia. Can you imagine if your son born affected by x-linked hypohidrotic ectodermal dysplasia XLHED had working sweat glands? Early results from six XLHED-affected boys who received an investigational medicine show they are indeed sweating and have other improved symptoms. Women, we invite you to learn if you are eligible to participate in for the study. Men, help us share information about the trial with women in your family who may be carriers of the gene for XLHED. We empower and connect those touched by ectodermal dysplasias through education, support and research. Advocate for Families. What are ectodermal dysplasias? Learn More.

It also provides medical and dental professionals with nfed information on early diagnosis and treatment options, nfed. Join us! What are ectodermal dysplasias?

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The Ensuring Lasting Smiles Act ELSA would require all private insurance group and individual health care plans to cover medically necessary services resulting from congenital abnormalities. That coverage would include services and procedures for any missing or abnormal body part necessary to achieve normal body function, including teeth. People born with ectodermal dysplasias are often unable to properly develop teeth. Their teeth may be missing, completely absent, have defective enamel or be shaped differently. If the teeth are not repaired or replaced, these individuals could have chewing, swallowing, digestive, speech and self-esteem issues.

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Ectodermal dysplasias are a diverse group of genetic disorders that involve defects of the hair, nails, teeth, skin and glands. Other parts of the body, such as the eyes or throat, may be affected as well. The combination of physical features a person has and the way in which it is inherited determines if it is an ectodermal dysplasia. For example, hypohidrotic ectodermal dysplasia affects the hair, teeth and sweat glands while Clouston syndrome affects the hair and nails. More than 50 different types of ectodermal dysplasias exist. Yet, most types share some common symptoms, ranging from mild to severe. The early diagnosis of a specific type will help identify which combination of symptoms the person has or will have.

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We are working to get a federal law that would mandate health insurance benefits for dental care of ectodermal dysplasias. Families affected by ectodermal dysplasias often have trouble paying for necessary dental work that's not covered by insurance companies. Men, help us share information about the trial with women in your family who may be carriers of the gene for XLHED. Set Valu Keyword Search. Phone This field is for validation purposes and should be left unchanged. We take your privacy very seriously. Your Message Required Max. Enter Email Confirm Email. Photos Drop files here or Select files. The ectodermal dysplasias are inherited disorders that involve defects in the hair, nails, sweat glands and teeth. Finding Success in the Water, in Law…. Learn more about the program and find a Dental Treatment Center near you. Share Your Story. The foundation provides informational materials and support for families affected by ED syndromes in the United States and around the world.

Very little was known about the ectodermal dysplasias when we formed in We also knew that it was up to the NFED and our families to lead the effort to make it a reality. We have made enormous strides in the understanding and treatment of the ectodermal dysplasias.

Through our program, we provide seed grants and access to people affected by the condition to researchers. Your Message Required Max. Children attend Kids Camp where they play with others like them. Researchers can request access to the Registry to look at de-identified information to help them pursue a promising research direction for ectodermal dysplasia. Take Action. Doctors and dentists lecture on ectodermal dysplasia topics and answer questions. Have a question for us? Each year, our community goes to Capitol Hill in Washington, D. Participate in Day on the Hill. Thank you again! Early results from six XLHED-affected boys who received an investigational medicine show they are indeed sweating and have other improved symptoms.