National Organisation for Rare Disorders Gold Member 2022.

The I am HH patient group has been awarded gold member status by the National Organisation for Rare Disorders (NORD) n the US.

Kallmann syndrome / CHH patient meeting. Boston College, USA. Sat 5th November 2022

Kallmann syndrome / CHH patient meeting. Boston College, USA. Sat 5th November 2022.

Patient meeting. Boston. Sat 5th November 2022.

Basic introduction to Kallmann syndrome & Hypogonadotropic Hypogonadism

Research study at Imperial College Hospitals,, London. UK.

Imperial NHS Trust, London is running a research project that includes examining the testicular function of men with Kallmann syndrome / CHH.

The initial stage of the project will involve two clinic visits at Charing Cross hospital in London & a £100 participation payment is available.

It will involve a screening visit for blood tests & semen analysis and possibly an ultrasound examination of the testicles.

If you are interested, please email for more information on:

man.scan@imperial.ac.uk

Dr Nikoleta Papanikolaou

Patient made video on Kallmann syndrome

Patient made video. Diagnosis of Kallmann syndrome / CHH.

What is Hypogonadotropic Hypogonadism ?

The puberty protein - Kisspeptin

Kisspeptin is the hormone that controls puberty and the reproductive function.

Among many other functions Kisspeptin acts on the hypothalamus to allow it to release GnRH. It is this GnRH that controls puberty and reproduction.

In people with Kallmann syndrome / CHH they are unable to release GnRH at all or in the correct manner in order to function correctly.

If injected with Kisspeptin people with Kallmann syndrome / CHH will not respond in the same way other people would. This makes Kisspeptin as useful diagnostic tool for Kallmann syndrome / CHH to distinguish it from delayed puberty.

Talk given by a KS patient to a group of paediatric doctors about his experiences with the diagnosis and treatment of Kallmann syndrome.

This talk was given by a KS patient from the UK who is now married with two children. Here he gives a talk to a group of doctors about his experiences with the condition.