Our Objectives To improve contacts, information and support among people affected by Lysosomal Storage Diseases, and their families, within New Zealand, To support and advocate for accelerated research into the causes and treatment of Lysosomal Storage Diseases, and for improvements to the treatment and care of affected people, To promote the education of families, clinicians and others involved in the care and support of affected people, To build links with overseas families, clinicians, researchers and support groups, to support local knowledge about these diseases, and advance the objectives of the trust, To support and advocate for the establishment of medical, testing, screening, genetic and other specialist services to meet the needs of affected people and their families, To work co-operatively with other groups and individuals interested in rare diseases to promote common interests, To hold money or property in trust for any unincorporated support groups for individual Lysosomal Storage Diseases, To raise money to achieve these aims. Promote our organisation to clinicians and policy agencies Lobby for the establishment of a specialist genetic metabolic referral service within New Zealand Support the establishment of a New Zealand Organisation for Rare Disorders Complete submissions to the Royal Commission on Genetic Modification with the theme of protecting and promoting continued research into the development of innovative therapies. Support the development of an international Lysosomal Diseases Alliance, of patient, family, clinical and research interests.
Public companies qualify for deductions of cash donations.
Qualifying gifts are exempt from Estate and Gift Duties and property conveyancing fees. We work co-operatively with the other support groups which already exist for some of the lysosomal diseases. A key goal of our organisation is to build international links with researchers, clinicians and other support groups, to speed research, to improve clinical care, and to increase the amount of information available to affected people and their families. Networks and Advocacy Our approach is based on the view that good networks among families lead to improved information and better support, and that organised lobbying by families will hasten the research effort and improve the clinical care. These networks will be extended to include clinicians and researchers who support our objectives.