Lysosomal Diseases Australia (LDA) www.lda.org.au/main.html

Lysosomal Diseases Australia (LDA) is a national umbrella organisation formed to represent the interests of people effected by lysosomal storage disorders including their families and carers, to maximise resources available for support services, treatment and research. LDA 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, LDA will pursue issues generally beyond the scope of the family-based groups.

National Tay-Sachs and Allied Diseases of Ontario Inc. is a non-profit charitable organization, founded in 1988 by a group of people who shared a common tragedy. They were parents or supportive family members and friends of children who were afflicted with rare, fatal genetic diseases. The site also contains a document written by a parent that outlines some practical strategies for taking care of your child at home in the "Resources" section. Although the group is centered in southern Ontario, membership and enquires from all of Canada are very welcome. For more information contact NTSAD - Ontario by telephone at (905) 634-4101 or email at ntsad@sympatico.ca.

CLIMB is a national umbrella organisation working on behalf of children, young people and families in the United Kingdom affected by metabolic disease. They are working toward funding research, facilitating medical treatment, and educating professionals and others about these diseases. CLIMB also provides information, counselling and advice for families and professionals, as well as supports families through grants to help meet equipment and other costs incurred in the care of their children. For further information, parents and professionals can contact Children Living with Inherited Metabolic Diseases (CLIMB) through this telephone number: 0870 7700 326.