Albinism Trust

AUCKLAND AREA SEMINAR   We are intendg to hold another of our popular Seminars this time for the Northern Region in the Cafeteria at the Royal NZ Foundation of the Blind, Parnell Road, Auckland,  on Saturday 9th October from 10:00 am to 3:30 pm.  You are warmly invited to attend and participate.  Catering will be by bring and share lunch.  To assist us with organisation please RSVP no later than Friday October 1st C/o Albinism@inspire.net.nz

In New Zealand its estimated that one person in every 17,000 has some type of 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. . Albinism can affect the eyes, skin and hair (Oculocutaneous Albinism) or only the eyes (Ocular Albinism).

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.

 Albinism Trust is interested in the many and varied real life experiences or insights of people with Albinism and those close to them.   We hope to bring practical common sense information together and publish a resource to help as required.  If you know of someone with something to share please let us know.  

At the right side of this screen there is a PDF File copy of a letter received from the Department of Health.  We encourage you to review it for any relevance to your situation.         

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

Explaining "Albinism" to  children can be difficult.   There is a very good  explanation of albinism for children at :-  http://www.kidshealth.org/kid/health_problems/birth_defect/albinism.html

After years of planning the "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 ] 

On Saturday 18th October 2008 we held a 'local contact' meeting in Dunedin and did the same in Hamilton on Saturday 31st October 2009.  We hope our next face to Face Seminar will be in Christchurch at a time and place to eb confirmed.      

Some issues which were raised in Hamilton include:-

• The cost of and access to Low Vision devices.

• Skin care availability of certain products.

• Medical and Health professional awarness.

• Communication with the RNZFB and its members.

• Funding and fundraising.

• Potential bid to Host the 2013 AFA Conference.     

Some other matters  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 locate 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