New website

A clinical research team at CHUV, Switzerland is leading European wide consortium that aims to bring together all the research on Kallmann syndrome / CHH into one place. Part of the project is to host a website for clinicians, researchers and patients to use to obtain the latest information on the genetics, diagnosis & treatment of Kallmann syndrome and other GnRH deficient conditions that cause a disruption of puberty.

The website is live now with the start up information. Patient orientated information will be added in the next couple of months followed in time with clinical guidelines for the diagnosis & treatment of Kallmann syndrome.

http://www.gnrhnetwork.eu/

USA Patient Meeting - 26th October 2013

There will be a patient meeting for patients with Kallmann Syndrome or CHH in America on 26th October 2013.

It will be held at Saddleback Memorial Hospital, Laguna Hills, Orange County, California.

The meeting will be for patients and families of patients. The meeting will be a mixture of presentations by experts in KS / CHH, a chance to ask the experts questions and more importantly the chance to meet with fellow patients in a relaxed atmosphere.

It will be a relaxed, informal meeting with plenty of time to socialise & talk with other patients.

More details will be provided soon, or please contact:


kschh2013@hotmail.com

or

neilsmith38@hotmail.com

Programme on CBC in America on Kallmann Syndrome.

Hopefully attached are links to three videos on AOL from an episode of "Doctors" on CBC in America where a 27 year old gets his first diagnosis of Kallmann syndrome.

They explain the basics on Kallmann syndrome very well and Brandon does an excellent job of explaining his condition.


http://www.aol.com/video/brandons-delayed-puberty/517683899/?icid=maing-grid7%7Cmaing6%7Cdl4%7Csec3_lnk1%26pLid%3D275735

http://www.aol.com/video/mri-to-examine-pituitary-gland/517683902/

http://www.aol.com/video/delayed-puberty-explained/517683901/