Leukodystrophies are rare genetic disorders affecting the white matter of the central nervous system (i.e. the brain or spinal cord). The majority of leukodystrophies are degenerative, causing symptoms such as impaired mobility, vision, speech and hearing, incontinence, inability to swallow and loss of cognitive skills. In some cases, they may cause death. They are often misdiagnosed and are poorly understood within the medical community leaving patients feeling isolated and unable to cope.

The Alex TLC Community Weekend brings together patients and families with a leukodystrophy to talk openly about their condition, develop effective coping mechanisms and optimise condition management through targeted workshops and activities designed to facilitate formation of supportive and meaningful, lasting relationships. Also in attendance are healthcare professionals and scientists who hear directly from those affected, presenting a rare opportunity for major stakeholders to progress ideas.