Where there is no cure, all care is palliative. What does this mean for the rare disease community

Join us for the October RareNET forum as we welcome Gail Hilton, Director of Programs at the Childhood Dementia Initiative, to explore childhood dementia and the importance of a palliative approach to care.

Childhood dementia encompasses more than 145 rare genetic conditions. For children and families navigating these progressive, life-limiting conditions, care often involves complex healthcare needs, multiple service systems and significant emotional and practical challenges.

But palliative care is not only about end of life.

In this session, Gail will explore how a palliative approach can be integrated from diagnosis onwards, helping professionals and care teams anticipate future needs, support quality of life, and recognise grief and loss throughout the family's journey.

Together, we’ll consider:

What a palliative approach means for people living with rare disease and their families.
Why anticipatory care and early grief support matter.
How health, disability and education professionals can work together to provide more compassionate, coordinated care.
What practical training and support is available for professionals working with families.

This is an opportunity to deepen our understanding, challenge assumptions about palliative care and reflect on how we can better support families across the rare disease community.

RareNET is an initiative of the GUARD Collaborative, bringing together the genetic, undiagnosed and rare disease community to share knowledge, strengthen connections and support meaningful change.

We look forward to seeing you there.

Contact the host of RareNET October 2026 Forum

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