Finding better treatments for ectodermal dysplasias takes teamwork. That’s why the NFED hosts scientific conferences, to bring top researchers together so they can share what they know, ask big questions and plan the next steps forward.

When scientists work together, discoveries happen faster. These conferences help make sure the brightest minds are focused on the same goals: better treatments and brighter futures for people and families affected by ectodermal dysplasias.

Past Conferences

Incontinentia Pigmenti Conference: Translating Discovery to Therapy

The NFED hosted the Incontinentia Pigmenti Conference: Translating Discovery to Therapy, February 20-22, 2025, in Charlotte, North Carolina. This hybrid event brought together participants, both virtually and in-person from around the world, to discuss advancements in the understanding and treatment of incontinentia pigmenti (IP).

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Complex Wounds in Ectodermal Dysplasias Conference

Young child with TP63 syndrome

The NFED hosted the Complex Wounds in Ectodermal Dysplasias Conference, November 3-5, 2024, at the Children’s Hospital of Philadelphia (CHOP). The primary focus of the conference was to creating a strategic plan to address the challenges related to wound healing in individuals with ectodermal dysplasias, particularly those with P63 syndromes. The conference proceedings were published in the American Journal of Medical Genetics.

Outcomes

Participants strategized and identified the following goals for the NFED’s wound healing research plan.

Short Term

  • Identify and define a deliverable therapeutic to bring to trial in a two-year time frame.
  • Establish research priorities aimed at accelerating wound healing research and therapeutic development.
  • Develop collaborations that focus on pursuing a deliverable therapeutic.
  • Publish conference proceedings.

Long Term

  • Support and sustain long-term collaborations directed at wound healing research and developing therapeutics.
  • Develop effective therapeutics to address the morbidity and mortality of ectodermal defects.
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International Ectodermal Dysplasias Research Conference: Translating Discovery to Therapy

The NFED hosted the International Ectodermal Dysplasias Research Conference: Translating Discovery to Therapy, October 21-24, 2021, in Charlotte, North Carolina. The conference was a way to identify opportunities and overcome barriers with the ultimate goal of advancing early diagnostics and developing novel therapeutic strategies aimed at symptoms that cause significant morbidity in individuals affected by ectodermal dysplasias.

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2006 International Research Symposium for Ankyloblepharon-Ectodermal Defects-Cleft Lip and/or Palate Syndrome

Families participated in an AEC Conference in 2006.

Collaborators: NFED, Texas Children’s Hospital/Baylor College of Medicine

Outcomes

  • Better characterized the changes that can occur in the skin, hair, and nails of those with AEC syndrome
  • Described the findings that occur in the hair and skin when viewed under the microscope, which can help with improved diagnosis
  • Increased understanding of how this disorder can affect the eyes, ears, hearing, teeth, limbs, growth, and psychologic functioning, which will hopefully lead to improved medical care
  • Improved understanding of how p63 functions in development
  • Identified eleven new mutations in the p63 gene in the study participants, but all were in the expected area of the gene

2003 Skin Erosion and Wound Healing in Ankyloblepharon-Ectodermal Defect-Cleft Lip and/or Palate (AEC)

Collaborator: NFED, Saint Louis University School of Medicine

Outcomes