• Blog
  • Join Us
  • Get Involved
    • Connect With Our Community
    • Advocate
      • Ensuring Lasting Smiles Act
        • ELSA Supporters
      • Ways to Advocate
      • Advocacy Resources
        • Preparing for an Advocacy Meeting
      • Register as an Advocate
      • Day on The Hill
    • Ways to Give
      • Smile Makers
      • Fundraise
      • Halloween Bash
    • Raise Awareness
      • Ectodermal Dysplasias Awareness Month
    • Attend an Event
    • Volunteer
      • Volunteer Application
  • Donate
National Foundation for Ectodermal Dysplasias
  • Home
  • About Us
    • Our Mission and History
    • Celebrating 40 Years!
    • How We Help
    • Leadership
    • Partners and Sponsors
    • Financials
    • Store
    • Contact Us
      • Update Your Profile
  • Learn
    • Library
    • Webinars
    • Symptoms
      • Skin Symptoms
      • Dental Symptoms
      • Hair Symptoms
      • Nail Abnormalities
      • Inability to Sweat
    • Types
      • Hypohidrotic Ectodermal Dysplasia
      • Ectrodactyly-Ectodermal Dysplasia-Clefting Syndrome
      • Clouston Syndrome
      • Ankyloblepharon-Ectodermal Defects-Cleft Lip and/or Palate
      • Witkop Syndrome
      • Goltz Syndrome
      • Incontinentia Pigmenti
        • Incontinentia Pigmenti Stages
        • Incontinentia Pigmenti Treatment
      • Trichorhinophalangeal Syndrome, Type 1
      • Tricho-Dento-Osseous Syndrome
      • Oculodentodigital Syndrome
    • Diagnosis
    • Genetics and Inheritance
    • FAQs
  • Research
    • Research Impact
    • Research Studies
      • Ectodermal Dysplasia Classification Studies
      • X-Linked Hypohidrotic Ectodermal Dysplasia Studies
        • Research Timeline
      • P63 Syndrome Studies
        • Ankyloblepharon-Ectodermal Dysplasia-Clefting Syndrome Studies
        • Ectrodactyly-Ectodermal Dysplasia-Clefting Syndrome Studies
      • Goltz Syndrome Studies
      • Type Unknown Studies
    • Scientific Conferences
    • Clinical Trials
    • Participate in Research
    • Resources for Researchers
  • Treat
    • Choosing a Doctor/Dentist
      • Recommend a Doctor
    • Medical Treatment Options
    • Dental Treatment Options
      • Dental Treatment Centers
      • Straumann Dental Implant Program
    • Insurance Assistance Program
      • Family Roadmap and Resources
      • Navigating Health Insurance Claims
    • Treatment Assistance Program
    • Health Care Provider Resources
  • Thrive
    • Coping with a Diagnosis
    • Meet Our Families
    • What to Expect
  • Blog
  • Join Us
  • Get Involved
    • Connect With Our Community
    • Advocate
      • Ensuring Lasting Smiles Act
        • ELSA Supporters
      • Ways to Advocate
      • Advocacy Resources
        • Preparing for an Advocacy Meeting
      • Register as an Advocate
      • Day on The Hill
    • Ways to Give
      • Smile Makers
      • Fundraise
      • Halloween Bash
    • Raise Awareness
      • Ectodermal Dysplasias Awareness Month
    • Attend an Event
    • Volunteer
      • Volunteer Application
  • Donate

Tag: #Diagnosis

Maximus’ Story with Goltz Syndrome

August 31, 2016July 25, 2019 by NFED Category: Stories of Hope

After a normal pregnancy, Brandi and Corey knew right away that something was wrong when their son, Maximus was born.  He had a wound on the top of his head, fused fingers and a missing toe. The nurses were hesitant to wipe off the newborn in fear his skin may slough up. In this interview,…

Page 2 of 2Prev12

Categories

  • Advocacy
  • Education
  • News
  • Research
  • Stories of Hope
  • Syndromes and Symptoms
  • Tips and Advice
  • Volunteer Spotlights

Donate

Help lead the way to find better treatments and cures.

Donate Now

Stay in the Know

Get email updates on what's going on in our NFED community.

  • We'll only send you NFED related materials.

  • This field is for validation purposes and should be left unchanged.

We'll only send you NFED related materials.

Sign Up for Our
Newsletter
  • This field is for validation purposes and should be left unchanged.

  • Home
  • Blog
  • About Us
  • Get Involved
  • Learn
  • Research
  • Donate
  • Treat
  • Sitemap
  • Thrive
Contact Us
618.566.2020info@nfed.org
6 Executive Dr., Ste. 2
Fairview Heights, IL 62208-1360
Connect With Us
  • Facebook
  • YouTube
  • Pinterest
  • Twitter
  • LinkedIn
Back to Top

©Copyright 2023 National Foundation for Ectodermal Dysplasias Privacy Policy