Who are we ?

Albinism Trust is a voluntary not for profit organisation which is committed to emphasising positives and achievements by people with Albinism.  The Trust was established at Palmerston North on Saturday 6th October 2007.  On 1st April 2008 we were Registered with the Charities Commission  [ Reg No CC22352 ]

Our Trustees are  Allen Little – Levin;   Richard Baines – Hutt; Dr Don McLaren – Rotorua;  Rod Buick – Geraldine;  Jan Crews – Auckland (04/14)

We aim to: 

  • Share ideas and information which enables people with Albinism to live, learn, work and play.   

  • Be a resource hub for parents and families of children with Albinism. 

  • Promote understanding and positive attitudes about Albinism.

  • Advocate for persons with Albinism.  

  • Be an effective member of the Blindness Sector Forum (NZ) and collaborate with various organisations seeking to advance the interests of Blind and Sight Impaired persons.   
Albinism Trust has published a booklet titled “Eyes Right”  which is an introduction to living with Albinism in New Zealand. We have also published an Audio CD ‘Living with Albinism’  which can be requested from the Blind Foundation by calling 0800-24-33-33. Do  tell others about these publications which have been produced in collaboration with the Blind Foundation.  Click the file below:-

ALBINISM TRUST Eyes Right.pdf(1,060.55 KB)

In New Zealand its estimated that one person in every 17,000 has some type of albinism.  People with albinism have absent or reduced pigment in their eyes, skin or hair.  They have inherited genes which do not make the usual amounts of a pigment called melanin which is essential for the full development of the retina.   Lack of melanin in development of the retina is the primary cause of visual impairment in albinism. Albinism can affect the eyes, skin and hair (Oculocutaneous Albinism) or only the eyes (Ocular Albinism).  For detailed information on Albinism visit “Wikipedia” at http://en.wikipedia.org/wiki/Albinism
There are estimated to be about 75 children known to have Albinism in New Zealand.    We aim to connect with all people with Albinism to support and encourage as required.  Explaining “Albinism” to  children can be difficult.   It is hoped our booklet will help parents to have realistic expectations about children with Albinism.   In New Zealand we are fortunate to have  a dedicated team of highly trained professional educators involved with “BLENNZ” who are available to support Children in their learning.  There is more helpful information on the BLENNZ site  http://blennzonline.edublogs.org/
Every person with Albinism is an individual with potential. There are people with albinism in every sector of society overcoming challenges such as Low Vision and Sunburn.

Low Vision

A big issue for people with Albinism is small print and seeing the things which are important.   For some years a Christchurch company “Blaxall Optics” has supplied a number of worthwhile low technology and inexpensive tools to help people with Low Vision. We are about to complete a Review of the “SeeTV” Binocular Spectacle.
Our colleagues Sight Loss Services of Auckland www.sightloss-services.com has published a very good booklet titled “Loosing Your Sight Finding Your Way” which has information loosing sight.  With Albinism ‘Low Vision’ is a fact of life rather than something happening with age or trauma.   “SLS” has kindly shared their booklet with us in .pdf    Click this file to read.
Sight Loss Services 2013.pdf(788.06 KB)