Rare Find Foundation exists to support those affected and their families, support research and to raise awareness of Tay-Sachs and Sandhoff Diseases.
Making a real and long lasting difference to those affected by these rare diseases.
Awareness | Research | Family Support | Screening | Medical Community Support
Sebby and our Founders
Anna Pak Poy & Marc Coupar's son, Sebby, was diagnosed with Tay-Sachs in December 2017, at 7 months old. Sebby sadly passed away in March 2019 at 22 months old. Sebby is a sparkly, charismatic treasure who continues to inspire many with his spirit and courage - most of all his parents, who established Rare Find Foundation.
The focus of the foundation is to support those affected and their families, support research, establish a disease registry, create awareness, improve clinical care and promote screening.
Disease Registery & Centre of Excellence
Establish a disease registry for GM2 conditions in Australia and New Zealand and run a
Centre of Excellence for the Medical community &
Provide support through the diagnosis and beyond for the families and carers affected by GM2 conditions.
As well as advocacy and equipment support.
Alongside our counterpart organisations, we strive towards providing a cure for these relentless conditions by supporting the dedicated researchers who are focused on the discovery of innovative treatment methods.
Promoting Disease Awareness
Creating awareness in both the general public and medical community of these GM2 conditions to help promote carrier status screening, prevention and early diagnosis.
FUNDRAISING & EVENTS
Rare Find Foundation rely on the generous support from the general public and corporate sponsors to help us make a vital difference to this very important cause.
Donations are appreciated at all times and we also hold fundraising events to help rally support and are especially grateful for anyone who would like to fund raise on our behalf. Contact us to find out how!