ROUTE MAP FOR RARE CONDITIONS

We have been working with the Genetic Alliance on a pilot project for a series of route maps designed to guide new diagnoses of rare disorders through their treatment and management options, both health and social. We were chosen as one of ten organisations for this project and have been given funding by the Genetic Alliance to help us produce these route maps, within which our practical information leaflets will provide an excellent starting point.

The Route Maps for Rare Conditions project is a new, creative approach to improving the health and well being of people with rare conditions at a national level. The project is developing a practical and cost-effective framework for improving information, access and coordination of health and social care services for individuals and families with a wide range of rare conditions.

Who is the Route Map for

This Route Map provides a comprehensive resource to be used by patients, families and health and social care professionals and has the potential to play a key role in personalised care planning for people with these conditions.

For more information about the Route Map project you can visit www.ald-amn.info

NEW

The first Survey about the journey of patients with ALD and AMN is now available. Go to www.ald-amn.info and download your copy!

We will be glad to receive your feedback.