What We Do
Rare Find Foundation is the first of its kind in Australia. It was created to ensure that every Australian diagnosed with Tay-Sachs or Sandhoff disease, and their family or carer, can receive much-needed support that is relevant to where they live. We will also support, to the full extent we are able, others with rare diseases for whom there is no support network.
In alignment with the National Strategic Action Plan for Rare Diseases, Rare Find Foundation aims to enhance:
Care & Support
Care & Support
- Provide person and family-centered care and support for all Australians affected by Tay-Sachs and Sandhoff diseases
- Ensure diagnosis of the disease and access to information is timely and accurate
- Enable all Australians to have equitable access to the best available health technology
- Integrate mental health and social and emotional wellbeing into rare disease care and support
Awareness & Education
Awareness & Education
- Create awareness of Tay-Sachs and Sandhoff diseases to help promote carrier screening, prevention, and early diagnosis
- Ensure Australian families affected by Tay-Sachs and Sandhoff diseases have access to information, education, and support that enables them to be active participants and self-advocate in their journey from diagnosis and beyond.
Research & Data
Research & Data
- Establish a disease registry for GM2 conditions in Australia and New Zealand
- Strongly encourage coordinated and collaborative data collection to facilitate the monitoring and cumulative knowledge of Tay-Sachs and Sandhoff diseases, informing care management, research and health system planning
- Support researchers who are focused on discovering innovative treatment methods and a cure, and encourage collaborative research
