Genetic Alliance UK this week launched a comprehensive Toolkit that will help patients and families with rare genetic conditions pull together vital information on the various services that exist to support them.
In the UK, one in 17 people is likely to be affected by a rare condition at some point in their life. Many patients spend years waiting for a diagnosis and even once they have one there is often no information available about the sorts of services and care they should be receiving. The Genetic Alliance UK’s Route Map Toolkit will help patients and their families to navigate the services they are entitled to receive.
The Toolkit provides guidance and support for patient support groups wanting to create condition-specific Route Maps helping people to access the right information at the right time and improving the care they receive. The Route Maps also support health and social care professionals by providing them with reliable information about rare conditions, enabling them to better support their patients.
Jessica Burke, Route Map Project Manager said, “We are delighted to be producing a freely available toolkit for patients. Our project has already produced 10 condition-specific Route Maps and we want to ensure that other patient groups have the information and guidance they need to create their own Route Maps”.
The Toolkit will be freely available from the Genetic Alliance UK website.