We are delighted to announce that a Rare Disease Collaborative Network (RDCN) has now been established specifically for individuals with Ectodermal Dysplasia and related conditions.
ED care is often fragmented which can lead to delays in diagnosis and managing the multi-faceted aspects of the condition can be challenging. To improve this, we applied to NHS England to create a dedicated RDCN for ED.
We are pleased to share that our proposal was approved in February 2025 and ED will now join 25 other established RDCNs.
The new ED RDCN brings together a group of expert providers committed to improving patient care, advancing research, and increasing awareness of ED.
Quarterly virtual multi-disciplinary team (MDT) meetings are now available to enable discussion of cases of suspected or diagnosed ED, allowing national experts to provide guidance without patients needing to travel.
The dates of the forthcoming virtual MDTs are:
Monday 23rd June 14:00 – 16:00
Monday 22nd September 14:00 – 16:00
Monday 15th December 14:00 – 16:00
If you would like to to discuss an individual in one of our MDT’s, please submit your case through this MS form: <<<<< LINK TO MS FORM>>>>
