How we can help you

We aim to empower and support you, with the intention of giving you the time and space to just be the parent or carer to your child or loved one.

We recognise that your time with your child or loved one is valuable and precious. Rare Find Foundation exists to support you, to advocate for you and to raise much-needed funds. In doing so, we hope to make time for you to enjoy your time together. For example:

  • We can provide you with access to support, information, advocacy and a network of individuals with similar experiences
  • We have a strong focus on individual and systemic advocacy, to achieve better outcomes for all individuals with Tay-Sachs or Sandhoff disease
  • We raise vital awareness and funds through our events, community projects, and medical community initiatives
Poppy with her mum