Hi, my name is Janine Varcoe from Australia. I have been doing some research on XLHED as my daughter has been diagnosed with this over a year ago. I’m not sure if this is the correct channel to go through as I wanted to register my details on the patient registry. I am interested to learn more about the studies and development of a recombinant protein. Can you please tell me where to register. I have been told by specialists in Australia that my daughter has a rare case of XLHED – in so far as that she is female, and normally males are the ones that have Ectodermal Dysplasia to the degree that she does. Please don’t hesitate to contact me should you require further details. Thank you in advance for your assistance. Janine.