Information for Families
The Australian Leukodystrophy Support (ALDS) group provides information about:
-
the importance
of linking with other sufferers and how to go about it [see
Linking People] - the various types of Leukodystrophy [see Types of Leukodystrophy]
- how to obtain genetic counselling [see Counselling]
- how to access support services from both the government and non-government sectors [find out how to Contact Us]
- information about personal and/or family counselling and how to go about it. [see Counselling]
To assist in keeping up to date with medical information, the ALDS runs a medical seminar series on Leukodystrophy topics of interest to both members and health professionals. These events usually run every two years with the highlight being the keynote address from a respected international specialist in the field.
On the practical side:
At ALDS we recognise that managing a leukodystrophy is not just about the clinical side of things. There are a lot of other considerations ranging from the need for understanding, support, family counselling, financial considerations and many more. Following are links to some sites that may be able to offer you practical information and resources including a link to a Victorian State Government website with valuable information regarding government entitlements. This site also offers information at a federal level.
http://www.dhs.vic.gov.au/concessions/entitlements/view-all
http://raisingchildren.net.au/children_with_disabilities
http://www.bearcottage.chw.edu.au/