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Rare Connect Kallmann syndrome community.

June 12, 2014

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.

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