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 2025 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.
Since the inception of the ED RDCN, we have held successful MDT meetings during 2025/2026. These meetings enabled clinicians from across the country to discuss cases collaboratively and share specialist expertise.
Upcoming MDT Meeting Dates
The dates and times for the next virtual MDTs are:
- Monday 22nd June 2026, 14:00 – 16:00
- Monday 28th September 2026, 14:00 – 16:00
- Monday 14th December 2026, 14:00 – 16:00
To learn more about the ED RDCN and how referrals work, please head to the main RDCN page.