Resources

We strive to make our work accessible so that others can use our information, knowledge and resources.

 

These are some of our resources that can support your own work, awareness raising and more. Additional information available via ‘Our reports and impact’ and ‘Facts and figures.’ 

 

If you use these resources or reference our work then please email and tell us. We’d love to know and it will help to shape our future work.

Care coordination report

Date:

We have worked with our members to demonstrate the value of care coordination and the impact of its absence. The report shows the value of care coordination can be seen across five themes.

A family playing with each other. A mum is holding a child while another, slightly older, child stand beside playing with the girl in her mums arms. They all look amongst each other on a bright sunny day.

Rare Resources: Wales

Date:

The Rare Resources guides have been produced by Genetic Alliance UK for families who have recently received a diagnosis of a genetic or rare condition, are on the journey to a diagnosis or who have been told their child’s condition is so rare they might not get a diagnosis.

A family playing with each other. A mum is holding a child while another, slightly older, child stand beside playing with the girl in her mums arms. They all look amongst each other on a bright sunny day.

Rare Resources: Scotland

Date:

The Rare Resources guides have been produced by Genetic Alliance UK for families who have recently received a diagnosis of a genetic or rare condition, are on the journey to a diagnosis or who have been told their child’s condition is so rare they might not get a diagnosis.