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.
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:
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.
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 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.