Our vision is support and access to treatment for everyone living with leukodystrophy.
Our support focuses on the similarities of these conditions, embracing all affected within a community of Tender Loving Care.
We provide a range of support services to individuals and families affected by leukodystrophy. This includes one to one support, counselling, our peer support and grant programmes.
Our Director of Support and other key staff members has lived experience of the many aspects of living with leukodystrophy.
We raise awareness of leukodystrophies and their impact on individuals and families to both the medical profession and general public, through our media activities, attendance at medical conferences and presentations to various audiences.
We support research into these rare conditions and raise awareness through campaigns targeting the general public and the medical profession.
You can get involved too and help raise awareness of leukodystrophy.
With so few available treatments, we understand that research is a significant priority and source of hope for our leukodystrophy community.
Alex TLC actively promotes and supports research in a number of ways, including representing patient voice, providing accessible research updates and promoting new research
We undertake various projects and campaigns to improve the quality of, and access to, treatments for leukodystrophy. We work towards a common goal of improving best practice for rare disease through our collaborations with the NHS, specialist medical professionals and scientists, peer and umbrella organisations.
