Families from 8 Countries With Rare Disorder Gather in Lincolnshire
(Lincolnshire, Ill.) - It's rare for a child to wear dentures. But, it won't be at the 38th Annual National Foundation for Ectodermal Dysplasias (NFED) Family Conference in Lincolnshire, July 11-13. There will be 109 kids affected by ectodermal dysplasias attending who will be missing most of their teeth due to their genetic condition.
Hosted at the Lincolnshire Marriott, Family Conference will draw 138 families from eight countries. The Family Conference is a 3-day event in which health care professionals representing a variety of fields provide workshops addressing the effects of ectodermal dysplasias, like absence of teeth, diminished sweating, skin erosion and how to best treat them. It's also where affected individuals can network with other families who share their challenges.
The dental issues are often the biggest challenge for individuals living in the United States who are affected by ectodermal dysplasias, according to NFED Executive Director Mary Fete.
"Our families face life-long, complex dental treatment," Fete said. "The second and more frustrating problem can be getting insurance companies to pay for this medically necessary care. They deny benefits saying it's cosmetic. A typical family can expect to spend more than $100,000 out of pocket on dental care in a lifetime. At Family Conference, we teach them how to submit and appeal insurance claims to be successful, but it's not easy nor does it always work."
Families at the Conference will also learn about what they can do to help the NFED advocate for federal legislation that will mandate that insurance companies provide health benefits for ectodermal dysplasia, because it's a congenital anomaly. The NFED is having an Advocacy Day on Capitol in Washington D.C., July 17th to advocate for the Ensuring Lasting Smiles Act.
About the Ectodermal Dysplasias
The ectodermal dysplasias are genetic conditions that involve defects in the hair, teeth, nails and sweat glands. Other parts of the body also may be affected. There are more than 180 different types of ectodermal dysplasia which are recognized by the combination of physical features an affected person has and the way they are inherited. Symptoms can range from mild to severe. Only in rare cases does ectodermal dysplasia affect lifespan and very few types involve learning difficulties. The ectodermal dysplasias affect men, women and children of all races and ethnic groups. One to seven in 10,000 babies are affected by an ectodermal dysplasia.
About the National Foundation for Ectodermal Dysplasias (NFED)
The NFED is the leading resource in the world serving the ectodermal dysplasias community. The mission of the NFED is to empower and connect people touched by ectodermal dysplasias through education, support and research. Located in Fairview Heights, Ill., the Foundation is in contact with more than 8,600 families in more than 80 countries. The NFED is a private, tax-exempt, not-for-profit organization pursuant to section 501(c)(3) of the Internal Revenue Code.