Have you, or someone you love, been affected by retinoblastoma (Rb)? Would you like to share your story to raise awareness of this rare cancer and help others going through the same thing? If so, we would really love to hear from you.

Many people first hear about Rb and its symptoms after reading about it, may be in a newspaper or magazine, or on social media – like a Facebook post that someone has shared. Read how a story on the evening news led to Harley’s diagnosis.

These stories are a really important way of letting people know about Rb and how to spot the signs. And they can also be a huge comfort to the parents of newly diagnosed children, who can often feel very alone and isolated.

There are a few different places to tell your story:

CHECT website

Our website gets more than 9,000 visits a month and the “your stories” section is one of the most popular areas. We also share all our latest articles on our Facebook and Twitter pages.

InFocus newsletter

We print more than 2,500 copies of our InFocus newsletter twice a year for our members and supporters – in May and November. Each edition features real life stories, news, information and support articles.

If you’d like to tell your story in InFocus, or you have any tips or advice that you think other parents would find useful, please email us a brief outline.


Sharing your story with the media is a really effective way to raise awareness of Rb among other parents.

We’ll write the press release, which you’ll read and approve before we send it out, and liaise with the media on your behalf.


Sharing your story as part of our vital CHECT fundraising appeals. 

How to send in your story

Email us your story, in your own words. There are no rules here, just start at the beginning and write about your experience. This could be one particular time in your life or your whole retinoblastoma journey. Please aim to write about 600-800 words but don’t worry if you go over or under this.

Please also send some photos to go with the story. Please try to send the original files rather than photos that have been reduced in size.

Email your story and photos to info@chect.org.uk. If you’d like to chat through anything, you can call us on 020 7377 5578. Thank you.