BATTEN DISEASE SUPPORT ANDRESEARCH ASSOC. INC., AUSTRALIAN CHAPTER
Registrations and Licenses
In order to effectively combat the devastation of Batten Disease, this Chapter is regulated under the following:
Australian Registered Body Number: 073 435 202
Australian Business Number 56 056 138 99
Charity Fundraising Licenses:
New South Wales 14877
Victoria 10132
South Australia 1298
ACT 19000244
Queensland 1692
Western Australia 20952
SUMMARY OF ORGANISATIONS ACTIVITIES
A volunteer based organisation with common goals to:
- Maintain an informative website, quarterly newsletter and family contact networks
- Provide families and their communities with support programs such as:
- Newly diagnosed family information packs
- Family (international) conference -every 2 years in varying states
- Bereavement support
- State-wide Information Resource
- Education/schooling – health professional database
- Publications Lending Library
- Ongoing phone and email contact, not only with the family but their extended family, friends, field specialists and general public
- Encourage and provide assistance to community fundraising and awareness including merchandise sales and donation tins
- Co-ordinate the annual National Batten Disease Awareness Day
- Liaise with international counterparts regarding funding research projects.
- Research funding provision to worthy scientific projects studying Batten Disease and working towards a treatment and cure (non-Government funded).
