The Rare Resources project (formerly Fresh Steps) has developed a toolkit of information resources for families in Scotland who have received a diagnosis of a rare, genetic condition or who have an undiagnosed condition. The toolkit is a flexible resource with information and signposting to support services in Scotland.
Following 12 months of interviews and engagement with families and professionals across Scotland, the Rare Resources toolkit is ready. 100 Individuals or families in Scotland are needed to test the new toolkit. Further information can be accessed at the following link Rare Resources Project
Courtesy of Genetic Alliance UK, Swan UK and Rare Disease UK.