LYSOSOMAL DISEASES AUSTRALIA has been established to represent the needs of all lysosomal storage disorder patients, families and carers Australia-wide, and specifically aims to:

• Increase the awareness and understanding, through education and publicity, of the general public, health professionals, allied health workers, families, carers and individual support groups, government agencies and the media, about lysosomal storage disorders and their effects on patients and families

• Increase political recognition and understanding of lysosomal storage disorders, by endeavouring to ensure the provision of appropriate and adequate governmental support services to patients and families

• Ensure that government, both State and Federal, is aware of the cost benefit advantages offered by expensive therapies, and that these therapies, when available, are provided free of charge to people affected by lysosomal storage disorders

• Encourage research involved with the diagnosis, management and treatment of lysosomal storage disorder patients

• Maintain close links with Australian and international family support groups built around specific lysosomal storage disorders to ensure their interests are being properly represented

• Promote and establish links with similar organisations for lysosomal storage disorders internationally

• Promote and establish links with Australian and international support organisations for other non-lysosomal organelle diseases.

LYSOSOMAL DISEASES AUSTRALIA will work together with parent support groups built around specific disorders. It is recognised that these groups perform a vital function in helping patients and families come to terms with a new diagnosis, and with on-going, day-to-day management and support issues.

Because of the individual rarity of these disorders, Lysosomal Diseases Australia will pursue issues generally beyond the scope of the family-based groups.