Welcome to the National Foundation for
Ectodermal Dysplasia!

To register with the NFED, please fill out the Registration Form.

When you register with the NFED, you are added to our database of affected individuals. Your contact information will never be shared with anyone unless you give us permission to do so in your registration, and then it will only be shared with affected individuals who are interested in connecting with other affected individuals.

Upon registration, the NFED will send you an information packet that contains the following:

• Brochure: We Are Here For You – The National Foundation for Ectodermal Dysplasias
• Charley's Story – One Family's Diary of Their Experiences of Raising a Son Affected by Hypohidrotic Ectodermal Dysplasias
• A Family Guide to the Ectodermal Dysplasias
• The Multi – Syndrome Guide to the Ectodermal Dysplasias
• A Dental Guide to the Ectodermal Dysplasias
• Parameters of Oral Health Care for Individuals Affected by Ectodermal Dysplasias
• A Guide to the Skin, Hair and Nails in the Ectodermal Dysplasias
• A Guide to the Eyes, Ears, Nose and Throat in the Ectodermal Dysplasias
• Listing of NFED Scientific Advisory Board Members
• Two past issues of the NFED's newsletter, The EDucator
• An Ectodermal Dysplasia Information Card
• Flyer – How to Find a Care Provider

In a second information packet, the NFED will send to you detailed information about our services.

Registration also entitles you to apply to the Treatment Assistance Program, the L. Marie Heard Education Scholarship Program, Dental Implant Program, receive care provider referrals and connect with individuals affected by ectodermal dysplasia syndromes. We will also add you to the mailing list so that you will receive our quarterly newsletter, The EDucator, and information about NFED events and ectodermal dysplasia research.

Change of Address

If you are already registered with the NFED but would like to submit a change in address or other contact information, please email us at info@nfed.org or call us at 618-566-2020.