New NHS Rare Disease Collaborative Network for Ectodermal Dysplasia
We are delighted by the establishment of a dedicated Rare Disease Collaborative Network (RDCN) for individuals with Ectodermal Dysplasia and related conditions.
Approved by NHS England in February 2025 and officially launched in June at our ICED conference, the ED RDCN brings together national experts to improve coordinated care, support earlier diagnosis, and advance understanding of ED.
This network will enable virtual multi-disciplinary team (MDT) discussions for individuals with suspected or confirmed ED, allowing specialist advice to be shared with local clinicians without the need for additional travel.
Two MDT meetings have already taken place in September and December 2025, with the next meeting date to be confirmed and updates to follow.
To learn more about the ED RDCN and how referrals work, please head to the main RDCN page.