Advocacy support

Unfortunately, there are examples of different families being provided different levels of support for the same condition. Sometimes, people in your care and support network may not know what an individual with Tay-Sachs or Sandhoff disease, and their family, needs or is entitled to. This can result in the individual and family not receiving the best possible care and support.

Rare Find Foundation will endeavour to provide advocacy support for your child or loved one wherever possible. In doing so, our hope is that you will be able to make the most of every special moment with them.

You are an expert in the care of your child or loved one

As the carer of your child or loved one, you are an expert in the symptoms they are experiencing and their needs, as well as any changes in their symptoms or needs.

As Tay-Sachs and Sandhoff diseases are rare, it is likely that not many of the medical, allied health or social support professionals you encounter will have heard of the diseases. This may mean they are learning how to best tailor care and support to the unique needs of your child or loved one.

You may be able to support the people in your care and support network with this by:

asking them to contact Rare Find Foundation for information and support
providing them with a hard copy of our Guide, asking Rare Find Foundation to send one to them, or directing them to our online resources
offering to connect them with other professionals in your care and support network
sharing your child or loved one’s experience with Tay-Sachs or Sandhoff disease

Consumer rights

Being familiar with your rights, and those of your child or loved one, can help you identify when there might be an issue with the care or support you are receiving, and what your options are to resolve any issues.

Further Information

The following web pages are good places to start:

The Australian Competition and Consumer and Commission (ACCC), Consumer rights: https://www.accc.gov.au/consumers

Australian Commission on Safety and Quality in Health Care, Australian Charter of Healthcare Rights: https://www.safetyandquality.gov.au/australian-charter-healthcare-rights

National Disability Insurance Scheme (NDIS), Your consumer rights: https://www.ndis.gov.au/participants/home-equipment-and-supports/assistive-technology-explained/your-consumer-rights

Who can you turn to for help?

When you need help, there are a number of options available to you.

We are committed to advocating for individuals and families who have received a diagnosis of Tay-Sachs or Sandhoff disease. You may also wish to advocate for your child or loved one, in which case Rare Find Foundation will endeavour to support you as much as you would like.

We can provide advocacy support in two ways:

Advocating for your child, loved one or family’s unique situation and needs.
This may include things like helping you to navigate the health, disability and social support systems, or advocacy alongside you or on your behalf.
Advocating for improvements to the systems that affect individuals and families with Tay-Sachs or Sandhoff disease, such as health and disability systems.
For example, it is important that systems are equipped to provide all individuals diagnosed with these diseases with the care and support they need in a timely manner, with as few challenges as possible for families.

Senator Marielle Smith is Patron of the Rare Find Foundation. If required, she is our champion and advocate in Parliament. She may also be able to assist families of newly diagnosed children to navigate government services, like the NDIS, or connect them with the appropriate MP or Senator to assist them.

Peak organisations

There are a number of organisations with a focus on supporting Australians in various matters. These are known as peak organisations, or peak bodies.

The following organisations play an important role in genetic and rare disease advocacy in Australia:

Genetic Alliance of Australia: http://www.geneticalliance.org.au/

Genetic and Rare Disease Network: https://gardn.org.au/

Genetic Support Network Victoria: https://www.gsnv.org.au/

Rare Voices Australia: https://www.rarevoices.org.au/

Syndromes Without A Name (SWAN): https://swanaus.org.au/

Your local politician

Everyone in Australia is entitled to contact their local politician, such as a Senator or Member of Parliament (MP), and Rare Find Foundation is there to support you along the way if you need it. This can be a powerful way to have your voice heard, or to resolve difficult issues.

Your local Member of the Parliament of Australia (MP) or Senator may be able to assist with issues related to national programs, such as Centrelink or the NDIS.

Your state or territory MP may be able to assist with issues related to local services, like hospitals and schools.

Service organisations

In some cases, it may be beneficial to contact the head of an organisation directly, and Rare Find Foundation can support you to do so.

Media outlets

Media advocacy can also be a useful tool. In some cases, media attention on an issue can help to quickly resolve it. We understand that this may not suit all families or circumstances. However, if this is something that you are considering, we would be happy to discuss this with you and we may be able to provide assistance.