Virginia Higgins's Contact Details

Virginia Higgins's Company Details

National Foundation for Ectodermal Dysplasias

Fairview Heights, IL, US • 5 - 9 Employees
Non-Profit

The NFED is the worldwide expert on ectodermal dysplasias and the only advocacy organization in the U.S. dedicated to individuals living with these disorders. Our mission is to empower and connect people touched by ectodermal dysplasias through education, support and research. In 1981, Mary Kaye Richter and 12 other families affected by ectodermal dysplasias organized and founded the NFED. The NFED has grown considerably since the early 1980s, a time when little was known about the rare conditions and the medical literature cited only a half dozen affected individuals in the United States. Today, we serve more than 5,100 families worldwide. When you are missing some or all of your teeth, smiling, eating and talking are not easy. The NFED believes every person deserves a smile. We work with families to help them understand their treatment choices, to increase their access to care and to find financial assistance for that care. We have a network of 20 Dental Treatment Centers, educate care providers, and have provided clients with more than $1.5 million in assistance for care. We have funded more than $2.5 million in research at 40+ centers around the world and sponsored numerous scientific conferences for specific syndromes and classification. NFED-funded research projects have identified genes for numerous ectodermal dysplasias, established treatment protocols and characterized many of the syndromes. Perhaps our greatest success comes from providing individuals and families affected by ectodermal dysplasia with a place to turn for reliable information, support and hope. We publish quality information to empower families with knowledge that their doctors often cannot give. We stand with open arms to welcome the family who has just been diagnosed, to answer their questions, and to allay their fears. The conditions come with challenges, but with support and encouragement, families can expect a bright future.