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Update – US patient meeting coming up.

October 28, 2018

Less than 3 weeks to go until the patient meeting at Boston College hosted by Dr Andrew Dwyer. We are hoping to have about 15 patients there hopefully.

The meeting will last from 11 am to 4 pm and have a meal afterwards at a local restaurant.  Patient. Andrew will give a couple of quick presentations of the basics of Kallmann syndrome and be able to answer any questions raised. It will also be a chance to talk and meet with fellow patients.

There will also be group conversations to help Andrew in developing web tools to help patients gain more information on what patients require from health care professionals. 


I am looking forward to meeting some new fellow patients and seeing old friends again.

I had an appointment with my new KS consultant in Newcastle, UK. Dr Richard Quinton was the doctor who first diagnosed me when he was at the Royal Free Hospital in London and I worked there as a Biomedical Scientist. It worth the trip from London to see a specialist KS endocrinologist.

I have switched from Nebido to go back onto hCG (human chorionic gonadotropin). I seem to prefer hCG as it gives a natural testosterone production. Since Pregnyl is not available in the UK anymore I have to use Ovitrelle which is designed for female use. The fact it comes in a pre-filled pen is helpful but the dose is too high for male use so I have to use only part of the pen each time. I am waiting to see how good my testosterone level will be with this treatment.

  1. Danielle permalink

    Hello! Is there an email list or something I could join to be notified of these meet ups? I’m a KS patient and this is my fifth year living in Boston and I didn’t know about these. I’ve never met anyone else with KS and would be interested in meeting you all.

    • We are hoping the Boston meeting will be a yearly event. I always post details here and in the KS groups on Facebook. We have 4 main KS patient groups on Facebook where you can get more information on the condition and talk to fellow patients.

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