First Connect

Learn. Share. Connect. Rejoice!

Welcome to the National Foundation for Ectodermal Dysplasias! Education, support, and assistance are the foundation of our welcome program, First Connect.  We seek to empower adults affected by ectodermal dysplasia and caregivers with affected children by giving them the resources and support they need. All of the information we provide you in the First Connect program is free.

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

Registration is free. 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.

Learn. - We understand that new families are eager to get all of the information they can on these rare disorders. In the first welcome packet (which you can receive on CD in the mail, in an email as attachments or in hard copy in the mail), you will receive extensive information on the ectodermal dysplasias and their treatment and NFED services.  Information includes a welcome letter, medical/dental guides, The EDucator, informational brochures, a cooling card and resource lists.

Share. -  The NFED staff personally contacts each new family after their initial contact and then again six months later.  Staff provides a listening ear for you to share your experience with ectodermal dysplasia. We also can answer any questions and provide needed resources.

Connect. - The NFED has Family Liaisons in different regions throughout the United States who provide family-to-family connections in addition to staff support. Liaisons are either adults affected by ectodermal dysplasia or the parent of an affected child. The Family Liaison from your area will reach out during the first year to welcome you, introduce themselves and offer their support.

Rejoice! - All of us rejoice that you have joined our NFED family! No one expects to have a child affected by a genetic condition or to have this challenge in life. But, the good news is that you are not alone. The NFED is here to walk that journey with you, offering information and support. We hope that in time, you will rejoice in knowing that the Foundation exists and that we care about you! 

Registration also entitles you to apply to the Treatment Assistance Program, the L. Marie Heard Education Scholarship Program, and Dental Treatment Centers, receive care provider referrals and connect with individuals affected by ectodermal dysplasias. You will be added to the mailing list so that you 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.