Rare Disease Collaborative Network for Ectodermal Dysplasia
We are thrilled to now have a dedicated Rare Disease Collaborative Network (RDCN) for individuals affected by Ectodermal Dysplasia and related conditions.
Accessing coordinated care for ED has historically been challenging. The condition often requires input from multiple specialist services, and this fragmented approach can lead to delays in diagnosis, difficulties in care planning, and unnecessary travel for patients and families.
To help address these challenges, an application was submitted to NHS England to establish a specific RDCN for Ectodermal Dysplasia, and this proposal was approved in February 2025, meaning ED now joins a growing number of nationally recognised rare disease networks.
The Ectodermal Dysplasia RDCN was officially announced in June 2025 and is now one of 28 NHS Rare Disease Collaborative Networks established to improve care for people living with rare conditions.
What does the ED RDCN do?
The ED RDCN brings together a national group of expert clinicians and specialist centres who are committed to:
- Improving access to coordinated, high-quality care
- Supporting early and more accurate diagnosis
- Advancing research and shared learning
- Increasing understanding and awareness of Ectodermal Dysplasia
As part of this network, virtual multi-disciplinary team (MDT) meetings are held to allow cases of suspected or confirmed ED to be discussed by national specialists. Importantly, this means expert guidance and care recommendations can be shared directly with your local clinician, without the need for additional appointments or long-distance travel for patients and families.
MDT meetings – current update
The ED RDCN has already held two successful MDT meetings, which took place in September and December 2025. These meetings enabled clinicians from across the country to discuss cases collaboratively and share specialist expertise. The date of the next MDT meeting is currently being confirmed. We will update this page as soon as further information is available.
How can cases be referred?
Healthcare professionals who would like further information about the ED RDCN or wish to discuss an individual in one of our MDTs can find full referral details on the Manchester Rare Conditions Centre website:
This is a significant and positive step forward for the ED community, helping to ensure our individuals and families receive more consistent, informed, and joined-up care wherever they live.
“The ED Rare Disease Collaborative Network thanks
the ED Society for their ongoing support.”
