Rare Find Foundation is establishing the only Disease/Patient Registry for GM2 conditions in Australia & New Zealand.
Among other benefits, the registry allows the monitoring of patient population and conditions, in order for:
a) early intervention for support to control or minimise disease symptoms and progression and;
b) identification of patient candidates for clinical trials at a stage at the earliest points of disease progression.
We are also creating a 'Centre of Excellence', which allows Neurology and Metabolic specialists, genetic experts and medical professionals across Australia to collaborate in order to establish the best symptom management pathways and supportive treatment for those affected by GM2 Conditions.
Alongside this will be expert access and support for families and carers of those affected by Tay-Sachs and Sandhoff in the way of a conference or location visits for those whom aren't able to travel.