The Rare Disease Collaborative Network (RDCN) for individuals with Ectodermal Dysplasia (ED) and related conditions was established in 2025 to address the challenges of fragmented care, which can lead to delays in diagnosis and difficulties in managing the condition’s multi-faceted aspects. Following a successful proposal to NHS England in February 2025, the ED service joined 25 other established RDCNs.
The ED RDCN brings together a group of expert providers committed to improving patient care, advancing research, and increasing awareness of ED. A key function of the network is the quarterly virtual multi-disciplinary team (MDT) meeting. These meetings enable discussion of suspected or diagnosed ED cases, allowing national experts to provide guidance to local teams without patients needing to travel.
Our MDTs have been joined by professionals from various fields including doctors working in primary and secondary care and allied health professionals. They are an opportunity to discuss complex cases and valuable specialist input can be provided for the individuals’ care plans.
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
Refer an Individual for Discussion
If you would like to to discuss an individual in one of our MDTs, please submit your case securely through the MS form following the link or QR code below:
https://forms.office.com/e/MqTchcs90C
