Sanfilippo Children’s Foundation

Facebook: Sanfilippo Children's Foundation

Instagram: @sanfilippochildrensfoundation

Sanfilippo is a rare genetic condition that causes fatal brain damage. It is a type of childhood dementia and most patients never reach adulthood. But there is hope. Researchers around the world are working hard to find effective treatments.

Sanfilippo is considered a rare disease: 1 in 70,000 children are born with the inherited condition. The exact prevalence is not known, but it is estimated that there are between 75 and 100 children living with Sanfilippo in Australia.

The purpose of the Sanfilippo Children’s Foundation is to drive research for a world without Sanfilippo Syndrome.

This will be achieved by:

• Funding research which might halt progression of the condition, reverse damage caused or improve quality of life for patients with the condition;
• Providing clear, accurate and up-to-date information to diagnosed families regarding the disease, therapeutic avenues and current research programs;
• Raising awareness of the disease amongst the community, including the medical profession;
• Advocating for improved outcomes for the Sanfilippo patient community;
• Improving the diagnosis path - more accurate and earlier diagnosis to enable appropriate treatment.