Delayed puberty clinical trials at NIH, Maryland, USA.
There is a specialist pubertal development clinic run at the National Institutes for Health in Bethesda, Maryland, USA.
https://clinicaltrials.gov/ct2/show/NCT00494169
They have an on-going research programme designed for KS / CHH patients. It is a 3 or 4 day clinic where they run a series of diagnostic tests and give information on treatment. They work closely with the clinic at MGH in Boston. They will also undertake the genetic testing as well. They mainly see younger patients who are in the process of being diagnosed but are happy to hear from any patient.
The clinic is free to attend and they normally can help with travel costs from within the US. They have seen patients from overseas as well. I know at least one person from the UK who visited there last year. It can be a good way of getting more information about the condition and talk to experience KS clinicians.
They can give advice on fertility and hormonal replacement treatments and hopefully be able to put you in contact with KS specialists in your area.
The clinic is run by Dr Angela Delaney.
To contact them for more information e-mail Alessandro Albano on:
alessandro.albano@nih.gov