Information for families

As Tay-Sachs and Sandhoff diseases are so rare, there is limited high-quality information available publicly.

In particular, it is difficult to find information specific to the Australian context. We have tried to overcome this by sourcing the information presented here from a number of reliable sources, including experts in medical and allied health care, and in social support.

We hope that you can find the information you need here, and we strongly encourage you to contact Rare Find Foundation and your care and support team for any further questions you may have.

Receiving a diagnosis

Gain an insight into the Australian health care and social support context, an overview of what your journey might look like, and information to support you and your family working together.

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Caring for your child or loved one

Explore physical care for your child or loved one, as well as feeding, communication and play.

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Palliative and end-of-life care

Find out more about this valuable type of care, and receive information as to how it can support your family. This section also touches on the passing of your loved one.

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Glossary

Our glossary provides explanations of the many terms that you will come across in your journey.

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Our families

If your family is affected by Tay-Sachs, Sandhoff or a Rare Disease, you are not alone. Rare Find Foundation is here to help from the day of diagnosis through day-to-day care, tough end-of-life decisions and beyond.

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