Our families
If your family is affected by Tay-Sachs, Sandhoff or a Rare Disease, you are not alone.
Rare Find Foundation is here to help from the day of diagnosis through day-to-day care, tough end-of-life decisions and beyond.
With an incredible network of Clinical specialists to provide expertise, resources to provide guidance and families to share experiences, rest assured there is a community here to support you when you need it.
We can help advocate to ensure you get the best equipment as fast as possible, provide respite trips and attend our family conference.
Rare Find Foundation is committed to helping Tay-Sachs and Sandhoff children and their families. We are here for you.
Poppy’s Story
Beautiful Poppy Heka was born 27th March 2018. She was such a “healthy” happy, bright and very cheeky little girl – always smiling and laughing, enjoying playing with her toys, going to the zoo, having picnics with her little best friend Serena. Until one day I noticed that Poppy started to decline in her development; she was no longer able to sit up properly on her own without tumbling over.