Join us for ICED25

When: 10th-12th June 2025

Where: Austin Court, Birmingham, UK

Our ICED25 conference will highlight excellence within the rare disease field, and prompt discussion, reflection, and action. We collaborate with other Ectodermal Dysplasia organisations worldwide dedicated to improving the health and well-being of people affected by the Ectodermal Dysplasias.

Building upon the success of previous conferences in Malmö (2002), London (2004), Copenhagen (2006), Nijmegen (2009), Erlangen (2012), Norway (2015), Spain (2018), and Paris (2022), ICED25 will bring together paediatricians, dentists, scientists, dermatologists, ear, nose and throat specialists, geneticists, oral and maxillo-facial surgeons, ophthalmologists, experts in child development and other specialists to discuss the challenges of ectodermal dysplasia and the latest advances in research.

“Our vision; a world in which no one faces their rare disease journey alone.”

The first two days of the conference will be for medical professionals only. The third day is our “Family Day” (12th), which will be exclusively for individuals affected and parents, providing a unique chance to delve deeper into the world of ED with the medical professionals in attendance.

Together, we provide a strong world voice. By working in partnership with patient organisations and professionals, we are breaking the isolation felt by
those living with Ectodermal Dysplasia, uniting all into a single unified force.

What can you expect?

World class speakers have accepted an invitation to present their research, including an update on the first recombinant protein therapy being developed for patients with the most common form of ectodermal dysplasia – XLHED.

The programme will include:

  • Trials, Treatments and Databases
  • Genetics, Taxonomy and “Other Types” of ED
  • Dental: Children’s Dentistry and Implants
  • Thermoregulation throughout the lifespan – review
  • Dermatology
  • Psychology and Social Science
  • Clinical services / MDTs

Important Ectodermal Dysplasia News & Information

Clinical Trial for Potential XLHED Treatment Seeking Volunteer Participants

advert for prenatal study for xlhed on a white background with blue and orange headings

The EDELIFE Clinical Trial is studying a potential treatment for boys affected by XLHED and is looking for volunteers to participate in the study. If you are a pregnant woman (over 18 years old), have a confirmed diagnosis of XLHED and are expecting a boy who also may have XLHED, you may qualify to participate. Learn More.