Who are we and what is our purpose

The CHARGE Syndrome New Zealand Trust was set up in 2025 and is a not-for-profit support group focused on supporting CHARGE individuals and their families. The CHARGE Syndrome NZ Trust is run by a dedicated group of parents and a person with lived experience of CHARGE Syndrome.

The CHARGE Syndrome NZ Trust is a registered charity with the Charities Services.

Prior to this the New Zealand families were part of CHARGE Syndrome Australasia Limited which had been established for 30 years. By establishing our own New Zealand entity it will allow us to focus on New Zealand families and supporting them locally with parent support and specialist information.

The objectives of Trust will benefit the New Zealand public through:

a. greater integration and ultimately full inclusion of people with CHARGE Syndrome in their community; 2026 Charge Conference Christchurch New Zealand March 13th to 15th

b. increasing awareness and understanding of CHARGE syndrome

c. improving the health of people with CHARGE syndrome in the community.

What is Charge

CHARGE syndrome, also known as CHARGE Association, is a specific set of birth features. The major diagnostic criteria were based on the letters in CHARGE. Not all individuals with CHARGE syndrome will have all the symptoms, and each of the symptoms can vary in their degree of severity.” (Sandra L.H. Davenport, M.D.)