Rare disease sibling resources

Siblings of those who live with a rare disease often face unique challenges and emotional complexities that are frequently overlooked.

The following resources provide practical advice, emotional validation, and support to help siblings navigate their experiences while fostering healthy family dynamics.

Did you know?

The phrase “Glass Child” has come to describe the sibling who may feel unseen or less important in comparison to the focus given to their sibling with chronic care needs.

Source: Global Genes

RARE Disease Siblings Resource Guide

Global Genes has held many presentations over the years on the concerns of and for rare siblings.

In October 2024, they created a comprehensive guide on rare siblings that shares:

Global Gene session discussing rare siblings
Resources for RARE Siblings
Organisations for Siblings
Videos
Podcasts
And more!

View the guide now and hear from rare siblings about their experiences.

View guide

Top tips for supporting your sibling child

Sibs exists to support people who grow up with or have grown up with a disabled brother or sister.

It is the only UK charity representing the needs of over half a million young siblings and over one and a half million adult siblings.

Sibs knows that parents of disabled children already have a lot to do and that extra time is hard to find.

They also get a lot of feedback from parents telling them that these things really make a difference to siblings’ wellbeing and to the sibling-parent relationship.

That’s why Sibs has shared their 10 top tips for supporting your sibling child to help aid parents in their journey.

View top tips

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