Patient meetings in the UK in 2015.

September 26th. Leeds City Centre.

Purely a social meet up. A meal in a local restaurant and a couple of drinks in a quiet pub. Normally we have about 10 people attend these meetings. Just a chance for patients to meet up on their and have a talk.

October 31st Royal. Victoria Infirmary, Newcastle upon Tyne.

Consensus paper on the diagnosis and treatment of KS and CHH.

This is a comprehensive paper and is the result of four years work from KS experts around Europe.

This paper provides all the information any doctor treating a patient with KS / CHH would need and allows patients to gain an insight into their condition.

It is a long paper to read but it can be very worthwhile, especially if patients have only recently been diagnosed or are being seen by doctors with little experience of treating patients with KS / CHH. It is the "gold standard" recommendations for diagnosis and treatment from the most experienced KS clinicians in Europe.

Volunteers required for UK TV programme on rare disorders.

Do you have a medical condition that is proving impossible to diagnose? Have you been through a long series of treatments and finally got a cure?

Do you want to showcase a new and innovative treatment that has improved your life? Tigress Productions https://www.tigressproductions.co.uk would like to speak to people with medical mysteries (both current and case studies) who’d like to take part in a new eight part TV documentary series.

Please call 0117 933 5618 or email medical@tigressproductions.co.uk for more information.

Ongoing clinical trial for fertility treatment for female KS / CHH patients in the US. Volunteers required.

Ferring Pharmaceuticals is currently recruiting for a Phase III investigational drug study for women with Primary amenorrhea with hypogonadotropic hypogonadism (Hypo Hypo) who are looking to get pregnant.

The study might be a good fit for you if you meet the following criteria:

•             You are a woman 18-40 years old
•             You have a clinical history or were recently diagnosed with primary amenorrhea with hypogonadotropic hypogonadism
•             You have the desire to become pregnant

Clinical trial for fertility treatments for KS / CHH patients in Europe (GnRH pump).

There is a clinical trial starting in Switzerland at the moment for female fertility treatments using the GnRH pump.

The trial is being run at CHUV hospital in Lausanne by Prof. Nelly Pitteloud. This centre is a world leading KS / CHH research centre.

The GnRH pump is rarely available in the UK due to cost and lack of experience in using the pump. It works on the same principle as the insulin pump Type I diabetics use.

Clinical trail for female fertility treatments for KS / CHH patients in USA and Canada.

Ferring Pharmaceuticals is currently recruiting for a Phase III investigational drug study for women with Primary amenorrhea with hypogonadotropic hypogonadism (Hypo Hypo) who are looking to get pregnant.

The study might be a good fit for you if you meet the following criteria:

• You are a woman 18-40 years old
• You have a clinical history or were recently diagnosed with primary amenorrhea with hypogonadotropic hypogonadism
• You have the desire to become pregnant
If you decide to take part in the research study, you would:
• Read and acknowledge a consent form

You Tube video from a young KS couple.

Rebecca, from America has made some interesting and informative You Tube videos about her experiences with Kallmann syndrome.

Here is a link to one of her videos.

https://www.youtube.com/watch?v=D_s4m3K35Ig

On going research programme into KS / CHH at Penn State Uni - volunteers still required.

As it's been several months since information about our study was last posted, I'm writing to ask if you would be willing to re-post this information to any appropriate locations. We have had some trouble reaching our targeted recruitment goals on what we think is a very important study for clarifying how KS/IHH and HRT (and pubertal sex hormones in general) influence our mental well-being.

The study information is below. Thanks very much in advance, and please let me know if I can provide any additional information, or if you have other ideas for increasing participation.

Research paper on psychosexual development in men with KS / CHH.

A research paper that was produced after on line questionnaires and face to face meetings with men with KS / CHH were completed.

A similar study is being proposed for women with KS / CHH.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4380912/

USA Patient Meeting. Boston. 29th March 2015.

We are planning to hold a KS patient meeting in Boston on Sunday 29th March 2015.

It will be a chance for people to meet other patients in a relaxed, social environment.

It will be a social meeting only. At present there will be no medical experts there, just a chance for patients to meet each other.

Further details will be posted here or on the Facebook pages or you can e-mail this site for more information.

neilsmith38@hotmail.com

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