ALD Life is a patients' support organisation working to improve the awareness about ALD (adrenoleukodystrophy) and AMN (adrenomyeloneuropathy). ALD Life supports patients and families in their journey through their condition with practical information, contact with others in similar circumstances, emotional and financial support through our grant programme, as well as promoting research for new treatments.
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 has developed 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. ALD Life has been one of ten organisations working on the Route Map and have been given funding by the Genetic Alliance to help us produce this tool.
This Route Map provides a comprehensive resource to be used by patients, families and health and social care professionals and will have the potential to play a key role in personalised care planning for people with these conditions.
Download the Survey Report of the Route Map Project [PDF]
