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.
Ectodermal Dysplasia 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 Ectodermal Dysplasia.
The new Ectodermal Dysplasia RDCN brings together a group of expert providers committed to improving patient care, advancing research, and increasing awareness of Ectodermal Dysplasia .Quarterly virtual multi-disciplinary team (MDT) meetings are now available to enable discussion of cases of suspected or diagnosed Ectodermal Dysplasia, allowing national experts to provide guidance without patients needing to travel.
To learn more about the RDCN or to submit a case for discussion, please visit this webpage.
