Join Us

We invite you to join our growing ectodermal dysplasias community of 10,000 families plus care providers, volunteers and friends who want to support our mission. You and your family will receive unwavering support, connections with other families, and access to the latest treatment and research information, including videos of educational workshops.

Already a member? Update your profile with your latest contact information to get direct access to conference workshop videos.

We registered with NFED recently when our 2-year-old daughter Sara was diagnosed with HED. Thank you for your quick response in welcoming us into the NFED community. Hearing back from the organization so quickly was comforting and reassuring. It gave us a sense of security knowing there is an active, helpful, responsive community out there who understands our concerns. – Alisa and Greg

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Type of Ectodermal Dysplasia:*
Experts have developed a new system to organize the 50+ different types of ectodermal dysplasias. Click here to learn more about the types of ectodermal dysplasias.
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NFED is committed to fair representation of the ectodermal dysplasia community. Knowing the answers to these questions will help achieve this commitment.
Are there other members of your family that are also affected by ectodermal dysplasia?*
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Number of Children or Additional Family Members Affected:*
Name of Person Affected:*
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NFED is committed to fair representation of the ectodermal dysplasia community. Knowing the answers to these questions will help achieve this commitment.
Type of Ectodermal Dysplasia:*
Please Specify Type:*
Genetic Mutation
Date of Birth:*
MM slash DD slash YYYY
Relationship to You:*
Name of Person Affected:*
First Last
Ethnicity*
NFED is committed to fair representation of the ectodermal dysplasia community. Knowing the answers to these questions will help achieve this commitment.
Type of Ectodermal Dysplasia:*
Please Specify Type:*
Genetic Mutation
Date of Birth:*
MM slash DD slash YYYY
Relationship to You:*
Name of Person Affected:*
First Last
Ethnicity*
NFED is committed to fair representation of the ectodermal dysplasia community. Knowing the answers to these questions will help achieve this commitment.
Type of Ectodermal Dysplasia:*
Please Specify Type:*
Genetic Mutation
Date of Birth:*
MM slash DD slash YYYY
Relationship to You:*
Name of Person Affected:*
First Last
Ethnicity*
NFED is committed to fair representation of the ectodermal dysplasia community. Knowing the answers to these questions will help achieve this commitment.
Type of Ectodermal Dysplasia:*
Please Specify Type:*
Genetic Mutation
Date of Birth:*
MM slash DD slash YYYY
Relationship to You:*
Name of Person Affected:*
First Last
Ethnicity*
NFED is committed to fair representation of the ectodermal dysplasia community. Knowing the answers to these questions will help achieve this commitment.
Type of Ectodermal Dysplasia:*
Please Specify Type:*
Genetic Mutation
Date of Birth:*
MM slash DD slash YYYY
Relationship to You:*
Comments About NFED Membership:
Please visit the Contact Us page if you have questions about membership.
Do you give permission to share your name and the individuals listed on this form and contact information including City, State, Phone and Email with other NFED families in the NFED Directory?*
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The NFED does not provide the names and addresses of those who contact us to other companies or organizations. We never rent, sell or share your confidential information.