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Bereavement Advice – Navigating RARE Grief

Top tips for supporting bereaved families

Top tips for supporting bereaved families

We reached out to our RARE community to ask families who have suffered the loss of a family member, to complete a short survey. We have compiled their responses to create this resource—offering people guidance on how to best support grieving families and how to start a conversation about bereavement. 

Survey –


Survey questions

  1. What do you wish people would have said and done for support (at the time or in the weeks/months/years after)?
  2. Was there anything in particular that helped you? (For example, something that someone said or did for you, or something that you did).
  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)
  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?
  5. What advice would you give someone who is recently bereaved?
  6. What was their rare condition?
  7. What was your relationship to them? (Parent, grandparent, sibling etc.)
  8. What age were they? (This is so that we understand if they were an adult or child)
  1. Don’t avoid them or avoid talking about the person who died.
  2. Ask them if there is anything you can do to support them. Don’t presume to know how best to support someone, instead ask how you can help.
  3. Don’t compare one person’s grief to another person’s grief or to how you or others feel. Everyone is different in how they process and cope with grief.
  4. Avoid using platitudes, it is unhelpful and no matter how well-meaning can cause a lot of hurt. 
  5. Listen to them. You don’t have to have all the answers or solutions. People want to be heard.
  6. Small gestures go along way. Remember important dates, anniversaries, birthdays, Mother and Fathers Days etc.
  7. If they have a charity or fundraising page you could offer to support it, either by sharing with your networks or if you love to run why not run for their charity, bake etc.
  8. Be present, if you commit to helping then follow through. Don’t just disappear
  1. Time – We know that time doesn’t heal all and that time will not take away the pain but it will make it easier to live with. There will be brighter days and time will soften the rawness. You will learn in time how to cope.
  2. One day at a time – Do not look to far ahead into the future, try and focus on one day at a time or even better just get through each hour ahead. Don’t make big plans or decisions yet, it can wait. 
  3. Allow yourself – Let yourself grieve, give yourself time there is no set plan or a right way to do this. Don’t judge how you are feeling and don’t put expectations on yourself or others. If you can’t cry that is ok and if you can’t stop that is also ok. 
  4. Ties – You are and always will be there family or friend no one can take that away from you.
  5. Open up- Try not to bottle things up, talk about the person you have lost, celebrate their life this doesn’t have to be grand gestures but remember how they would have laughed at that joke, be real and remember them as they were, how grumpy they were in the mornings or how they hated romcoms! 
  6. Perspective – If you want to speak to someone outside your situation find a therapist. Alternatively find others who understand what you are going through. Find support groups or individuals that will be there for you, let them know you don’t need a solution but just support.
  7. Accept – Life is going to be different now and it is ok to feel however you are feeling. Don’t regret anything or judge yourself for how you behaved prior to this. 
  8. Lighter – Do things that make you feel even the slightest bit lighter, go for a walk, go to dinner, see a movie. Be kind to yourself.
  9. Rare Revolution (
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