Childhood Dementia Initiative and the Rare Care Centre invite Western Australian families to take part in a special consultation in Perth that centres on really listening to families affected by childhood dementia. Its unique format will allow you to cover the topics that matter most to you and give you the chance to have conversations with other families.

The Perth Long Table: Exploring the Issues in Health will focus on experiences accessing state-specific health care and support services. The goal is to unearth challenges and opportunities for change. The ‘long table’ method allows for free-flowing, frank conversation.

Present on the day to listen and learn will be key stakeholders ranging from researches, to those working across paediatric and adult settings, the NDIS, education, allied health, clinical nursing and palliative care.

This session is being presented in partnership by Childhood Dementia Initiative and the Rare Care Centre.

Who should register

We are hoping to hear from a broad range of families who are based in Western Australia including:

Families who love a child or children alive today with a childhood dementia condition
Bereaved families
First Nations families
Families from metropolitan, regional and rural locations
Culturally and linguistically diverse families
Families who have recently received a diagnosis
Families in post-diagnostic care
Those whose child(ren) is/are transitioning from paediatric to adult services
Families with experience accessing clinical trials

Not sure if your child’s condition is considered a childhood dementia? There are over 100 rare and ultra-rare neurodegenerative genetic conditions currently identified as causing childhood dementia. You can see a list of these conditions here.

Any questions? Please contact joanne@childhooddementia.org