The services provided by Leukodystrophy Australia are crucial to supporting individuals affected by leukodystrophy. There are many different types of leukodystrophies, each is rare and most cause progressive disease. As a result, individuals and families affected by leukodystrophy can feel isolated and worry that others do not understand their needs. Affected individuals and their families can face significant stress managing severe and chronic health issues along with the associated emotional, financial and social pressures. Currently, the medical management of these conditions is advancing at an unprecedented rate which can generate confusion and uncertainty within the community. Leukodystrophy Australia helps individuals and families to connect with each other and with supportive resources and to access accurate medical information. This service supports and empowers individuals and their families to live successfully with their condition.
Leukodystrophy Australia is committed to providing a sustainable support service that can grow and evolve as needed to meet the substantial and changing needs of this patient group.
Dr Chloe Stutterd
Victorian Clinical Genetics Service