The Jennifer Trust is currently developing a Route Map for Spinal Muscular Atrophy
A Route Map is defined as a comprehensive, living guide which will signpost the way to health and social care for patients and families to help improve access to information, leading to earlier diagnosis, improved care and support. Route Maps will also benefit health and social care professionals providing them with information to enable them to work in conjunction with patients and families to plan for their care.
We are one of ten rare disease charities working on this 3 year project with Genetic Alliance. As progress is made, we will keep you updated in this area.
