Each year, we hold our Family Conference to provide life-changing experiences for our NFED families. Annually, 300 to 400 people from all over the world and the U.S. get to experience that they are no longer alone, that they feel connected and that they finally get to have the experience of talking to doctors who actually know about these rare syndromes. We also share Conference experiences with over 20,000 followers on our social media outlets.
Ectodermal dysplasias only occur in three out of every 10,000 births. They 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.
They face many challenges including extremely costly dental treatment that are most often are not covered by their medical insurance companies, little or no hair (or hair that is sparse, wiry and brittle), lack of sweat which can result in a life-threatening situation, and some have cleft and lip palates, horrific skin erosions, blindness and/or missing fingers and toes which could lead to numerous surgeries and procedures. The NFED exists to help them cope, thrive and lead successful lives.
Family Conference is extremely important to our NFED families because many affected by an ectodermal dysplasia don’t have anyone in their communities with the same disorder. They get to participate in research projects, learn more about the various syndromes, and learn protocols and treatments for skin, eye, teeth, nails, and sweating issues. Most importantly, individuals have the opportunity to meet others who face similar challenges. We hope you will help us continue to make these experiences for our families come true.
Families will join us from all over, including your community. Not only will you impact the lives of those affected by ectodermal dysplasias, but you will also share and grow your brand with a national audience.
Below is a sponsorship and ad form. Please choose the best one for you, and mail the enclosed form and envelope along with payment or pledge before March 15, 2018.
6 Executive Drive, Suite 2
Fairview Heights, IL 62208
We hope that you will partner with us. Thank you!