About National foundation for ectodermal dysplasias
The National Foundation for Ectodermal Dysplasias (NFED) is a non-profit organization that aims to empower and connect individuals and families affected by ectodermal dysplasias. The foundation provides education, support, and research opportunities to help those with this rare genetic disorder lead fulfilling lives.
Ectodermal dysplasias are a group of inherited disorders that affect the development of the skin, hair, nails, teeth, and sweat glands. These conditions can cause a range of symptoms including abnormal tooth development, sparse hair growth or complete baldness, dry skin or eczema-like rashes, and difficulty regulating body temperature.
The NFED was founded in 1981 by Mary Fete who had two children with ectodermal dysplasia. She recognized the need for support and resources for families like hers who were struggling to find answers about their children's condition. Today the foundation has grown into an international community of over 10,000 members.
One of the primary goals of the NFED is to provide education about ectodermal dysplasias to both medical professionals and affected individuals. The foundation offers webinars on various topics related to these conditions such as dental care management or genetic testing options. They also host an annual family conference where attendees can learn from experts in the field as well as connect with others who share similar experiences.
In addition to education opportunities, the NFED provides support services such as peer mentoring programs and online forums where members can ask questions or share their stories with others who understand what they are going through. The foundation also offers financial assistance for families who need help covering medical expenses related to ectodermal dysplasias.
Research is another important aspect of the NFED's mission. They fund studies aimed at improving diagnosis methods and developing new treatments for these conditions. In recent years they have made significant progress towards identifying specific genes responsible for different types of ectodermal dysplasias.
Overall, the National Foundation for Ectodermal Dysplasias is a valuable resource for anyone affected by these rare genetic disorders. Their commitment to education, support, and research has helped countless individuals and families find answers and connect with others who understand their journey. If you or someone you know is living with ectodermal dysplasia, the NFED is an excellent place to start your search for information and resources.