RARE Revolution Magazine: Parents and family bereavement survey

Starting a conversation after the loss of a child or family member

RARE Revolution are collating responses from parents and family members from our rare disease community to help create content offering advice and support between parents and families from cross condition communities, and to raise awareness to educate other people on how to start a conversation about bereavement .

This survey is anonymous, we have asked if you can name the rare condition for classifying rare disease communities.

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* 1. What do you wish people would have said and done for support (at the time or in the weeks/months/years after)?

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* 2. Was there anything in particular that helped you? (For example, something that someone said or did for you, or something that you did).

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* 3. Did you find a support group to help you? (Could you give details about the group and the support offered and how/if it helped)

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* 4. What did/do you find unhelpful/upsetting? (For example, do/did people avoid you or avoid talking about your grief or your child/family member? Or did you find the opposite with people being too involved?

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* 5. What advice would you give someone who is recently bereaved?

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* 6. What was their rare condition?

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* 7. What was your relationship to them? (Parent, grandparent, sibling etc.)

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* 8. What age were they? (This is so that we understand if they were an adult or child)

Thank you for your support and taking the time to complete the survey.