Identifying the unmet health needs of patients with congenital hypogonadotropic hypogonadism using a web-based needs assessment: implications for online interventions and peer-to-peer support.

http://www.ojrd.com/content/9/1/83

http://www.ncbi.nlm.nih.gov/pubmed/24915927

This paper was written by Andrew Dwyer of CHUV in Switzerland. Through an on line survey and three patient meetings he interviewed a number of Kallmann and CHH patients to gauge their feelings and attitudes about their diagnosis and treatment.

One clear idea from the paper is that since KS / CHH is such a rare condition there is an onus on the patient to take a lead in finding out information for themselves as they can often be treated by health professionals who themselves have not come across a patient with KS / CHH before. Internet sources and patient groups can play a big part in this.

Having KS / CHH can be a very isolating condition, especially if not diagnosed, so being able to connect to and communicate with fellow patients can be very helpful to some patients. A lot of patients will not feel the need to actively partake in groups but are happy enough just to know that there are other patients out there that they could talk to if they wanted.

Some patients might only need the support of groups at specific times such as getting the original diagnosis, starting relationships or trying to achieve fertility.

It is clear that some patients with KS / CHH are content with their diagnosis and are happy just to get on with their lives. However it is important to identify the patients that might need extra help and ensure that they have access both to patient support groups and expert medical opinion if they need it.

Rare Connect Kallmann Syndrome Community.

https://www.rareconnect.org/en/community/kallmann-syndrome

Rare Connect is a joint venture by EURODIS (European organisation that runs support groups and communities for rare disorders) and NORD (USA based National Organisation for Rare Disorders).  

Rare Connect provides a framework for patient support groups for rare condition to publish information on the internet and help patients connect and communicate with each other.

There is a community group for Kallmann syndrome.

They also allow groups to have on line web seminars via video link so patients can talk to other patients and medical experts in real time. It is a form of on line video conferencing. Once the group has been established and has enough members it is hoped we can organise one for Kallmann syndrome.

There are patients meetings occasionally but having video conferencing will allow patients who can not attend these meetings to talk to other patients and medical experts on Kallmann syndrome and CHH.

We already have groups on Facebook and Yahoo but this is a network totally separate from any social network groups and allows fellow patients to communicate in privacy.