Who do you know who has gone too soon? 

In our conversations with families affected by rare disease, all too many have lost loved ones. In fact, 30% of children diagnosed with a rare disease die before their 5th birthday. Their families feel isolated and often their loved ones simply do not know what to do or say to support them. Sometimes all they need is to simply know someone is there for them and that they can talk about their loved one - as and when they need to.

As Ceridwen Hughes, SbD’s Creative Director explains:

“The 30% project was designed to start the conversation about child bereavement due to rare disease and highlight the need for more support for families. The impact of child bereavement is huge for families and their friends”.

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