Stuart Meets With Local Advocates and Patients with Rare Genetic Syndrome

FAIRVIEW HEIGHTS, Ill. – State Rep. Katie Stuart, D-Edwardsville, met with advocates and discussed the needs of patients and families affected by a rare genetic syndrome during a visit to the world headquarters of the National Foundation for Ectodermal Dysplasias (NFED) in Fairview Heights. The Foundation works to support and advocate for those affected by the disorder, which can cause the skin, sweat glands, hair, nails, teeth, and mucous membranes to develop abnormally.

“Today’s tour was very informative and showed me how the NFED supports families and helps them navigate health care for their loved ones who are affected by Ectodermal Dysplasias,” said Stuart. “Many families have to travel long distances or even move due to lack of insurance coverage. Some are unable to find effective care. The NFED helps these families to obtain care with less strain on their resources and raises awareness about this rare disorder.”

The NFED serves families and affected individuals alike. Along with helping with access to treatment, they also provide financial assistance and help secure dental insurance coverage for these families. More information can be found on their website—www.nfed.org.

“The National Foundation for Ectodermal Dysplasias has been serving the ectodermal dysplasias community for 40 years,” said Mary Fete, Executive Director of the NFED. “It all started as a conversation around a farmhouse kitchen table in Mascoutah, IL among concerned families. Because ectodermal dysplasias are a rare group of genetic disorders, little was known about them at the time of our founding, in 1981. Today, the NFED is recognized as the worldwide expert on ectodermal dysplasias and the only advocacy organization in the United States dedicated to those living with these disorders. At the heart of our organization is our families. They drive our mission to empower and connect people touched by ectodermal dysplasias through education, support, and research. As we say, the NFED is more than a foundation; it’s a family!”

For more information, call Rep. Stuart’s office at 618-365-6650 or email repkatiestuart@gmail.com.