Albinism

"Albinism"  refers to a group of inherited conditions.  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.   In New Zealand its estimated that one person in every 15,000 has some type of albinism.

Every person with Albinism is an individual and has potential. 

For detailed information on Albinism visit "Wikipedia" at http://en.wikipedia.org/wiki/Albinism  

After  years of planning our New Zealand "AlbinismTrust" was set up in Palmerston North on Saturday 6th October and Certified on 12th October 2007. On 1st April 2008 we were Registered with the Charities Commission  [ Reg No CC22352 ] 

We aim to make connections and build supportive relationships amongst people interested in Albinism.   

Some things the Trust is doing include :-

•  Prepare and distribute a basic information brochure

•  Organise and foster public awareness initiatives

•  Advocate to medical / health / pharmaceutical interests

•  Encourage  health profession awareness

•  Foster public health, safety and education awareness

•  Organise personal support and individual advocacy

•  Engage in work place and peer education

•  Provide home and family reassurance

•  Set up peer support, coaching and mentoring activities 

•  Organise face to face gatherings

Please help us to identify people with albinism who we might approach and tell about Albinism Trust.

There are about 75 children known to have Albinism in New Zealand.  ALBINISM TRUST aims to reach and connect with people of all ages and stages.

We need to gather names, addresses and contact details so we can tell people about what is proposed.   Some people for their own reasons may decide on opting out, that’s fine but we hope to make contact with as many as we can locate. 

Please help us connect