Gone too Soon
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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.
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.
