Krystle Kontoh

Project Officer - Facilitating Networks

Main areas of work are:

Over the course of the next three years (Aug 2008 - Aug 2011) I will be supporting the development of three networks of clinical expertise with 8 of our members. These Patient Support Groups will represent three conditions; namely rare cancer, rare dermatological and rare neurological genetic diseases. Working with patients and their families alongside the patient support groups to varying degrees a protocol will be developed in the first year, to guide the formation of these networks within the following two years.  

We believe there is a real need for a project such as this as our previous research has highlighted the difficulties that children, adults and families with rare genetic disorders experience in receiving high-quality up-to-date information and optimal healthcare. We are confident that not only will the results of this project benefit the patients we will be working with, it will serve as a template for other Patient Support Groups to utilise in developing their own Networks of Expertise.

Email: krystlegig.org.uk