The ectodermal dysplasias are rare conditions, some more than others. In fact, there are 50+ types. Families often wonder how many others share the type they have.
The following information is taken from our database. As you will see, the largest group is made up of individuals who have just told us that they have some type of ectodermal dysplasias but didn’t tell us which type.
Are you in this group? Perhaps you didn’t know what type when you first contacted us, but now you do have a specific diagnosis. You can help us by updating your profile. Just fill out the short form and tell us which syndrome affects you or your loved ones.
We know that there are many more individuals out there with these syndromes. They simply have not contacted us yet!
Have you registered every person in your family who has ectodermal dysplasia with us? Do you have extended family members who are also affected but have not joined the NFED? Share this blog with them and invite them to join us.
You count, and each of your loved ones counts. Please let us know about every person in your household who is affected.
Together, we are stronger. We are here supporting you, supporting each other.
1. UNKNOWN SYNDROME
3,681 families either don’t know what type or didn’t report it
2. Hyphohidrotic Ectodermal Dysplasia (HED) Syndrome
2,101 individuals (families didn’t report which type of HED).
3. X-Linked Hypohidrotic Ectodermal Dysplasia (XLHED) Syndrome
2,074 individuals
4. Ectrodactyly-Ectodermal Dysplasia-Clefting (EEC) Syndrome
506 individuals
5. Incontinentia Pigmenti (IP) Syndrome
383 individuals
6. Clouston Syndrome
268 individuals
7. Goltz Syndrome
218 individuals
8. Ankyloblepharon-Ectodermal Defects-Clefting (AEC) Syndrome
204 individuals
9. Wiktop Tooth and Nail
130 individuals
10. Autosomal Dominant Hypohidrotic Ectodermal Dysplasia (ADHED) Syndrome
42 individuals