In addition to the Guide for the newly diagnosed, other guides for support for those affected by inherited retinal disease are listed below.
Guide for parents of children diagnosed
If you’ve just learned that your child is, or will become, visually impaired, this is likely a difficult time for you and your family.
This guide for parents of children diagnosed with an inherited retinal disease may assist you in managing this new situation. It includes suggestions on understanding your child’s condition, what to tell your child, telling others about your child’s diagnosis, support for the family, support groups, helping to adjust, adapting the home, finding the right ophthalmologist and information about genetic testing.
Guide for friends of the newly diagnosed
This Guide provides some suggestions to assist in the understanding your friend’s condition, and how you can support them in both practical and emotional ways can be of great assistance.
This guide also provides a summary of Do’s and Don’ts which may be helpful.
Guide of financial assistance supports
Support programs that provide financial assistance include the NDIS, disability support pension (blind), age pension (blind), carer payment and carer allowance, adaptive equipment assistance, pensioner education supplement, employment services, and travel and transport support.
Each is independent of each other and should be applied for separately.