With rare diseases, we take the approach of “If we don’t, who will?”.
The Hospital Research Foundation Group is proud to support research and resources for rare, incurable diseases to give families hope.
.
Rare Disease Support
Helping families of children with rare, incurable Tay-Sachs and Sandhoff Diseases through a $25,000 grant to the Rare Find Foundation, which went towards producing online and hardcopy information resources about these rare and life-limiting conditions.
Researcher
Tay-Sachs and Sandhoff diseases are rare, progressive, neurological genetic disorders.
Supporting children with Childhood Dementia and their families through a $75,000 grant to the Childhood Dementia Initiative, which went towards building patient and research networks that will help identify and connect families, supporting and empowering them in a community of carers of childhood dementia.
There are currently around2,300 children living with dementia with a devastating prognosis that many of them will not reach adulthood.
Supporting families in paediatric palliative care through the Women’s and Children’s Health Network by developing an important Volunteer and Peer Mentor Program to help families with a child in palliative care.
The parent mentor program involves recruiting and training volunteer bereaved parents to provide a mentoring role to parents and caregivers of a child with a life-limiting condition.
