We understand that wound healing presents a significant challenge for individuals with TP63 syndromes. This is why we are thrilled to share that the National Foundation for Ectodermal Dysplasias (NFED) will host a wound healing conference in just a few weeks, November 3-5. The collaborative Complex Wounds in Ectodermal Dysplasias Conference will occur at the Children’s Hospital of Philadelphia (CHOP). The primary focus of the conference: creating a strategic plan to address the challenges related to wound healing in individuals with ectodermal dysplasias.
What are TP63 Syndromes?
TP63 is the name of a gene. Mutations or changes in that gene are responsible for causing several different types of ectodermal dysplasias. The TP63 syndromes include ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome; acro-dermato-ungual-lacrimal-tooth (ADULT ) syndrome; ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome and limb-mammary syndrome. We have also called TP63 syndromes simply as p63. They are the same!

Skin Erosions or Complex Wounds in TP63 Syndromes
Babies born with TP63 syndromes can experience life-threatening skin erosions that can take years to heal. These wounds are extremely painful and difficult to manage. This causes immense stress for both the child and the entire family. Babies are at risk for severe infections, leading to complex treatment plans, hospitalizations, and, in some cases, sepsis and death.
The NFED has led research efforts to better understand and treat skin erosions since 2003. While our efforts developed a treatment protocol that has helped save lives, we still have much to learn about these wounds. What causes them? Can they be prevented? What can we do differently to treat them so they heal more quickly?
The NFED is committed to finding treatments and potential cures for these challenges and has provided funding to several researchers studying these complex wounds in ectodermal dysplasias. This includes Dr. Maranke Koster, who is the principal investigator for this conference. Dr. Eric Liao, a long-time friend of the NFED, has generously offered to host this event and support several aspects of the conference. Dr. Liao is the founding Director of the Center for Craniofacial Innovation at the Children’s Hospital of Philadelphia and a pediatric plastic surgeon-scientist. Dr. Liao emphasized that this conference will bring together thought leaders on ectodermal dysplasias worldwide to exchange ideas and data that could advance the care of these challenging conditions.
Researchers across multiple disciplines will share research findings. We plan to foster networking and collaboration, and stimulate conversation.
Ultimately, our goal is to find better ways to diagnose these wounds early and develop new therapies to treat the symptoms that can be life threatening.

What Is Next for the Collaborative TP63 Research?
The NFED recognizes that establishing a registry and tissue samples is vital to moving our research agenda forward. We will seek expert guidance to establish best practices for the tissue repository and registry.
This conference is phase 1 of a collaborative effort to move research forward that will not only help our community but also have the potential to positively impact wound healing for other diseases and disorders. We plan to publish our top priorities and the next steps we will take , and what deliverables will help the NFED translate science into therapies for our community.
We are grateful for all collaborators who are making this important gathering possible. Even more, we look forward to sharing with all of you who are connected to the NFED, the invaluable learnings and aspired impact of this conference on all affected by TP63 syndromes. Stay tuned.
I am a 43 year old man who has Ectodermal Hypoplasia. I had fluid build up in my shoulder and had a surgery to have it drained. After the surgery the wound never healed and has just gotten worse. Recently, they have also found Squamous Cancer cells in the wound. I
am working with Plastic surgery at Albany Med in Albany, NY. They are hoping to try a new skin graft surgery with ReCell used to hopefully help with Epithelialization. I would greatly appreciate any insight.
Hi, Troy. Please send your message to Kelley at kelley@nfed.org. Thank you!