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Individuals with OFDI can have few or many of the following features.
Friends’ Health Connection
This is an organization that helps connect families with similar syndromes (but they have a membership fee).
Children's Craniofacial Association
CCA is a well-developed site, devoted to assisting families find current news, affiliated hospitals, financial assistance, craniofacial surgeons, legislative advocacy and newsletters.
FACES: The National Craniofacial Association
While this website does not discuss OFDI specifically, it is a great website with general information on craniofacial conditions, treating medical centers, financial guidance, and links.
The mission of this website is to enhance self esteem and to provide general information on facial disfigurement conditions. It has book reviews, insurance information, peer networking and school programs.
National Kidney Foundation
Under the “parent & family education” link you can find a lot of information on kidney diseases in general.
National Foundation for Ectodermal Dysplasias
This site specializes in conditions affecting the skin and associated structures (nails, teeth, hair)