FOR IMMEDIATE RELEASEInformational Sessions, Friendships, Family Bonding, and Much More at Rare Disorder Conference July 23rd - 25th Who: The National Foundation for Ectodermal DysplasiasWhat: NFED Family ConferenceWhen: July 23rd, 24th, 25th, 2015Where: Cheyenne Mountain Resort – 3225 Broadmooor Valley Road, Colorado Springs, CO 80906Why: An opportunity for families affected by the rare genetic disorders, ectodermal dysplasias, to gather information on the syndromes and treatment options and to network with other affected families.

PHOTO OPPORTUNITIES Children affected by ectodermal dysplasias who cannot sweat swimming in a pool to keep cool in

the summer heat at the NFED Beach Party, Cheyenne Mountain Resort, Thursday, July 23, 6:30 p.m. – 9:30 p.m.

69 children affected by ectodermal dysplasias and their 52 siblings playing games, singing, dancing, making crafts, and several other activities at the NFED Kids Camp, Cheyenne Mountain Resort; Thursday, July 23, 1 p.m. – 5 p.m.; Friday, July 24, 9 a.m. – 5 p.m.; Saturday, July 25, 9 a.m. – 3:30 p.m.

Children affected by ectodermal dysplasias who have only a few teeth will be receiving free dental examinations from professionals, Saturday, July 25, 8:30 a.m. – 11 a.m.

PEOPLE WHO CAN BE INTERVIEWED Deann Huxman, mother of two affected sons, Tyler, 14, and Grant, 8, of Moundridge, Kansas. Mary Fete, M.S.N., R.N., Executive Director of the NFED. Timothy J. Fete, M.D., M.P.H., Pediatrician, Children’s Miracle Network Distinguished Professor

and Chairman in the Department of Child Health, University of Missouri Health Care and member of the NFED Scientific Advisory Council.

Timothy J. Wright, D.D.S., M.S. Professor and Chair of Pediatric Dentistry, University of North Carolina School of Dentistry.

(Colorado Springs, Colo.) – Families from three countries (Brazil, Canada, and U.S.) and 33 different states, who are affected by rare disorders called ectodermal dysplasias, will gather in Colorado Springs, Colo. to hear the latest information on treating their conditions. They will be attending the 34th Annual National Family Conference sponsored by the National Foundation for Ectodermal Dysplasias (NFED), July 23-25, at the Cheyenne Mountain Resort.

About the Ectodermal DysplasiasThe 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 ectodermal dysplasias 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. According to the Birth Defects Encyclopedia as few as one or as many as 7 in 10,000 babies are born 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 7,100 families in more than 85 countries. Eighty-five cents of every dollar raised is spent on education, support and research. The NFED is a private, tax-exempt, not-for-profit organization pursuant to section 501(c)(3) of the Internal Revenue Code.

Press ContactJodi Edgar ReinhardtDirector of Marketing and CommunicationsNational Foundation for Ectodermal DysplasiasCell - 618-806-3384Jodi@nfed.org www.nfed.org