Lysosomal Diseases New Zealand
 New Zealand  |  Research/Dev

To improve contacts, information and support among people affected by Lysosomal Storage Diseases, and their families within New Zealand, and to support and advocate for accelerated research into the causes and treatment of Lysosomal Storage Diseases, and for improvements to the clinical care of affected people.

Lysosomal Storage diseases are inherited genetic defects which result in an enzyme deficiency. 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 are extended to include clinicians and researchers who support our objectives. It is our view that rare diseases do not get a fair share of resources for research, or in health care planning, so advocacy is required to address the imbalance.

Research

Information

Support and advocacy

Fundraising

Manage Listing