Prior to our formation in 2007 there was no organisation specifically for people with Albinism in New Zealand. There have been well established organisations in the United States and Britain. The Australian “Albinism Fellowship” developed about the same time as our Albinism Trust.
A big challenges for us is putting to rights the misinformation which seems to get traction around Albinism. One of the best information and educational resources we have found is a short video produced by Annette Fergusson of Dubbo, NSW, Australia. Annette who is herself a person with Albinism, has kindly given us permission to share her video here on the Albinism Trust web site.
Some issues raised with us include:-
- The cost of and access to Low Vision devices
- Educational Information resources.
- Computer access and literacy.
- Ethnic discrimination.
- Employability of people with Albinism.
- Family and personal relationships.
- Social networking and Facebook group.
- Skin care availability of certain products.
- Medical and Health professional awareness.
- Communication with the Blind Foundation and its members.
- Funding and fundraising.
Other matters we are working on include:-
- Organisation and fostering of public awareness initiatives
- Advocating to medical / health / pharmaceutical interests
- Encouraging health profession awareness
- Accessing affordable Low tech, Low Vision aides.
- Fostering public health, safety and educational awareness
- Organisation of personal support and individual advocacy
- Engagement in work place and peer education
- Provision of home and family reassurance
- Setting up peer support, coaching and mentoring activities
- Organisation of face to face gatherings
A major concern has been just how little reliable information about Albinism has been available to the interested public. The Trust has a major task in sharing information with people it may concern.