30%
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.
“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”.
View the Exhibition
Hear their Stories
Watch the Films
Tell us your Story
If you would like to tell us your experiences and take part in this project, please send us your details, along with your story and we will be in touch.
Click here to tell us about your experiences.
Some of your stories.
Click on the pictures below to read about Efan, Emma, Zach, Dhian and Elsa.
How you can Share
Help us make a difference by showing people they are not alone.
Please share who you feel has #GoneTooSoon and let’s start the conversation about the importance of support for those affected by rare disease.
Post your words / picture / video onto your own Facebook or Instagram profile/page with the hashtag #GoneTooSoon and tag ‘@samebutdifferentcic‘.
Tweet your words / picture /video onto your own Twitter profile with the hashtag #GoneTooSoon
and tag ‘@SBDRareProject‘.Post your video onto your own Youtube channel with the hashtag #GoneTooSoon
and email the video link to enquiries@samebutdifferentcic.org.uk.
Make a Donation
Same but Different recognise the importance of providing support for all families affected by rare disease, which is why we are raising funds to ensure there is support available for anyone affected. After diagnosis, most people are unsure where to turn and not all conditions have a support organisation. Through our Rare Navigator Service, we will support families at all stages of their condition, no matter how short or long it is.
Your donation will help us provide the support that families need, when they need it.