My name is Neil Smith. I was diagnosed with Kallmann Syndrome when I was 23 years old at the Royal Free Hospital in London. Up to that point I was dismissed as a "late starter" or "late bloomer".

It was quite a relief to finally be able to put a name to the condition and to know that I was not alone with the condition.

Soon after I met my first fellow patient who was very keen to help patients access information about Kallmann syndrome through the organisation he set up called HYPOHH.

On this website I have tried to bring together all the information from the HYPOHH booklet and website, while at the same time updating it in certain places and adding in information I have gathered over the years.

I talk to and meet with fellow patients whenever I can, which I also find a very useful experience. I also meet with KS clinical experts to keep up to date with information and then pass it on to fellow patients when I can.

 We aim to set up a formal patient support group recognised by the National Organisation of Rare Disorders (NORD) in the US. The group will be a non-profit support group with any funds raised through contributions being used to help raise awareness of Kallmann syndrome / CHH, patient information material and the providing of financial support to patients where appropriate.