Start the conversation

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.

30% Project Gallery

This exhibition was created by photographer Ceridwen Hughes. If you click on each image below, you can read about how a rare disease diagnosis impacted on the life of each family.

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, no matter how rare it is. When families are given a diagnosis for their child or loved one, they are often 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 are affected by rare disease. We are the only organisation in the UK who will provide a Rare Navigator service to ALL families affected by rare disease. Unfortunately not all conditions have a support organisation and with this service we will ensure everyone can find the support and care they need when they need it.

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. you could share your loved one’s photo, a video or just a few words about them.

you are not alone.

Post your words / picture / video onto your own Facebook profile/page with the hashtag #GoneTooSoon and tag ‘@samebutdifferentcic‘.

Post your picture / video onto your own 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

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.