Clouston Syndrome: Perfectly Different

Addison Kemper spent her life being told she’s perfect, but knowing she was different. She had little hair and problems with her nails. Kids bullied her. Life was hard at times. She knew she must have a condition of some kind but found no answers. Her baby’s arrival led her to a diagnosis for both: Clouston syndrome. Those two words opened the door a new world.

Family-driven Grassroots Action is the Answer

Jen Steele’s life was forever changed in 2012, when her daughter, Alli, was diagnosed with ectodermal dysplasia. Her family spent the next few years commuting 240 miles round trip to the University of Iowa to meet with geneticists, doctors and dentists. She discovered the National Foundation for Ectodermal Dysplasias (NFED) online and called for help and support. The Iowa mom quickly learned that Alli’s dental needs would exceed their financial abilities. She was not one to ask for help or be complacent and just accept the fact that their medical insurance would not cover Alli’s medical needs. With no political experience, the Steele family joined other NFED families in taking action to advocate for the Ensuring Lasting Smiles Act.

Ectodermal Dysplasia Treatment Videos Now Available

The one thing all our families want is information about ectodermal dysplasia treatment. You want to know what to expect for you or your child. You are seeking treatment options. You are looking for answers. That’s where the National Foundation for Ectodermal Dysplasias comes in. We now have six free videos of educational workshops from our 2017 Family Conference available to watch. You can hear from our experts, see their presentations and learn.

This Is Not Some Hollywood Smile Issue

A Canadian mother trusted her instincts and had her son genetically tested when he didn’t develop all of his teeth. Their journey led to a diagnosis of odontoonychodermal dysplasia, a rare type of ectodermal dysplasia. It also explained symptoms for other family members. Read what Jamie Critchell is determined she must do now.

Ectodermal Dysplasias: How Nails Can Be Affected

The nails in some types of ectodermal dysplasia may be… poorly developed, small, thick or thin, brittle, discolored, cracked, abnormally curved, or ridged. In addition, they may grow slowly or shed periodically and may develop light spots, lines, or patches. The nails and surrounding cuticle area may become infected by fungus, yeast, or bacteria.  If…

What do your Family Conference fees actually pay for?

Basically, all your fees pay for is your food. We solicit sponsors, grants and use general donations to fund room rentals, speakers’ (12-15 unbelievable docs and dentists donate their time each year) and staff travel, scholarship recipients, off site activities, AV rental and childcare costs.The NFED absorbs 75% of the cost of the event. The 2012…

Meet the People Who Helped Plan the 2012 Fam Con

2012 Family Conference Committee July 18-21, 2012 Orlando, Florida Our Family Conference Committee offered lots of great ideas for this year’s National Family Conference in Orlando. Because of their input, we have added a track for young adults and a “buddy” program where we will pair up veteran families with new families at the conference….