We have mailed the registration form of the Regional Family Conference to be held in Jackson, MS at the Jackson Marriott Hotel on Saturday, September 10th, 2011 to all constituents in Mississippi and surroundings states. Most of you should have received this form/flyer with program by now! If not, click on the highlighted link which will take you…
2011 Don't Sweat It Golf Classic in Texas!
Please, check out another great fundraiser for the NFED: the Zach Hamm Don’t Sweat It Golf Classic in Spring, Texas! This Golf Tournament will be held on Sunday, August 14th. Click on the link for more info!
2011 Halloween Bash in New York City!
One of the biggest fundraisers of the year for the NFED is the Halloween Bash in New York City. Please, Click on the word Halloween Bash for Save the Date Info. More information will follow as soon as it is available!
How do we pick our National Family Conference Site?
Location, Location, Location! Have you ever wondered how we pick all the fun and exotic places that the NFED holds the National Family Conference? Do we throw a dart at a map and select our fate? The process is a little more scientific than that. To keep things fair for all parts of the country,…
Could not come to our National Family Conference? Tell Us Why!
Our 2011 National Family Conference is sadly enough over with. Almost 400 individuals were in O’Fallon, Illinois to learn about the ectodermal dysplasias and met others who are similarly affected. We are thrilled that so many families were able to join us. If you were not able to attend this year’s Family Conference, we want…
NBC St. Louis TV Interview @ NFED National Family Conference
Please, check out the TV interview by KSDK St. Louis during our NFED National Family Conference in O’Fallon, IL Great exposure for the NFED. https://www.ksdk.com/news/article/268092/3/Despite-hot-days-rare-genetic-disorder-keeps-people-from-sweating
St. Louis Dispatch Newsarticle on Splash City Waterpark!
Please, check out the article with interview and 7 great pictures on the NFED outing to Splash City Waterpark! Image : Heat is tough on those with rare genetic disorder.
Info on Tour of NFED Office, Saturday 24 July, 2011
If you are interested in touring the NFED office in Mascoutah, IL after the conference is over, please do so! However, the NFED will not provide transportation. Driving Directions to our office were given at registration! Please, ask any of the staff if you cannot find your driving directions. We will be glad to direct…