Information and support are important to managing ectodermal dysplasias. Who better to share your challenges and triumphs than with a group who understands what it is really like to live with ectodermal dysplasia? To help you build a strong support network, we have many ways for you to connect with our ectodermal dysplasias community.
I can’t tell you guys how much we appreciate all you have done for us! The connections we have made via NFED are so amazing. I received a message from a mom telling me how much we have helped her family and how her daughter looks up to our daughter, yet we have never met in person. This is a family that the NFED connected me a couple years ago to help with a 504 plan. It just so happened that her daughter was struggling with being different the day NFED posted Allison’s picture on Facebook. Because of her picture and message, it helped her and made a huge difference. – Jenny
Connect with Us
We have vital information to share with you. Our staff can listen and help you. We can also connect you with other families from your area, with your syndrome, or who have experienced similar issues.
Request a Contact List of Affected Individuals in Your Area
An adult affected by ectodermal dysplasia or the parent of an affected child can request a contact list of families in their state or with their syndrome. First, you must join the NFED. Second, you must give permission to be included in the contact list in order to receive one. Request a list now.
Contact the Family Liaison for Your Region
Families often want to talk to others who have “been there, done that.” Adults with ectodermal dysplasia and parents of affected children are just the people for the job. They volunteer as trained family liaisons and will
- share their experiences,
- offer support, and
- discuss helpful NFED resources.
Join Our Private Facebook Groups
Ask questions. Share thoughts. Join the conversation online. We have our main Facebook page and several private groups. For the private groups, we restrict group memberships to the intended audience. Also, we ask that you register with us to gain entrance to the group. Join today! Do you have an idea for a group you would like us to have? Let us know.
Acro-Dermato-Ungual-Lacrimal-Tooth (ADULT) Syndrome
Ankylobelpharon-Ectodermal Defects-Cleft Lip and/or Palate (AEC) Syndrome
Ectrodactyly-Ectodermal Dysplasia-Clefting (EEC) Syndrome
Hypohidrotic Ectodermal Dysplasia
Focal Dermal Hypoplasia, AKA Goltz Syndrome
Ectodermal Dysplasias Affected Adults Ask Me Anything
Ectodermal Dysplasias – Grandparents Community
Ectodermal Dysplasias – Adult Women’s Group
Incontinentia Pigmenti (IP) – NFED
Oculodentodigital (ODDD) Syndrome
Tooth and Nail Syndrome (Witkop Syndrome and Fried Syndrome)
Tricho-dento-osseous (TDO) Syndrome
Trichorhinophalangeal Syndrome – Type 1 (TRPS1) and Type 2 (TRPS2)