Important Ectodermal Dysplasia News & Information
Clinical Trial for Potential XLHED Treatment Seeking Volunteer Participants
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.
Below are a selection of videos in multiple languages where you can hear directly from researchers and patients about this clinical trial.
Edelife Clinical Trial Video Playlist – English
Edelife Clinical Trial Video Playlist – Italian
Edelife Clinical Trial Video Playlist – French
Edelife Clinical Trial Video Playlist – German
Edelife Clinical Trial Video Playlist – Spanish
Edelife Clinical Trial Video Playlist – Portuguese
EDIN – Recruiting Operations & Strategy Director
The Ectodermal Dysplasia International Network (EDIN) are currently recruiting to fill the role of Operations & Strategy Director to help strengthen and develop our work supporting the global Ectodermal Dysplasia community.
This is a part-time, remote consultancy role (approximately 10–15 hours per week) and would suit someone with experience in areas such as:
- Fundraising and grant writing
- Strategic and policy planning
- Project coordination
- Working with patient organisations, researchers, clinicians and international partners.
This is an exciting opportunity to help shape the future of international collaboration, information and support for people affected by Ectodermal Dysplasia worldwide.
Application deadline: Monday 31 August 2026
You can find the full job description and application details below 