Childhood Tumour Trust

17/06/2026

🎉 The wait is over! 🎉

We are so excited to share the games created by Psychology students Khatija and Aliza from Manchester Metropolitan University designed specifically to help children and young people with NF1 build confidence, develop social skills and have fun along the way.

These games are the result of months of collaboration, creativity and listening to the voices that matter most – our young members. 💚💙

A huge thank you to every child and young person who took part in the workshops, shared their ideas, tested activities and helped shape the final games. This project would not have been possible without your honesty, enthusiasm and imagination.

Today, we are sharing the fruits of your hard work. These aren't just games; they are resources created by young people, for young people.

A special thank you to Khatija and Aliza for the time, dedication and care they have put into this project, and to Manchester Metropolitan University for supporting this collaboration.
We can't wait to see these games being used at our upcoming camps and events, helping even more children and young people with NF1 build confidence, friendships and a sense of belonging. 🌟

Thank you to everyone who made this possible. This is what happens when young people are given a voice and the opportunity to shape the support they want to see. 💚💙

16/06/2026

Following the Government's discussion around restricting social media access for those under 16, it has made us reflect on the role social media plays within the NF1 community.

Many of the children and young people we support tell us that they struggle with friendships, confidence and feelings of isolation. For some, social media provides a way to stay connected with friends, meet others who understand life with NF1 and feel part of a community that truly gets it.

Whilst online safety must always be a priority, for many young people living with a rare condition, social media can be much more than entertainment – it can be a source of friendship, support and belonging.

At Childhood Tumour Trust, we know that connections matter. Whether those connections happen face-to-face at our events and camps, through our Zoom sessions, or online through social media, helping people feel less alone remains at the heart of what we do.

14/06/2026

💚💙 Did you know that Patches and the Very Special Diagnosis is available as an animation?

This much-loved story helps children understand an NF1 diagnosis in a gentle, child-friendly way using our mascot, Patches the Giraffe. 🦒

The animation is narrated by one of our very own Youth Ambassadors, Jacob, who does a fantastic job of bringing the story to life.

Whether your child has recently been diagnosed, you're looking for a way to explain NF1 to siblings, friends, classmates, or simply want to revisit the story, we encourage you to take a look.

Thank you, Jacob, for helping us make this important resource accessible to even more families affected by NF1. 💚💙 https://www.youtube.com/watch?v=i3Ax9XTS_kQ

12/06/2026

🌈 This Pride Month, we celebrate love, authenticity, and the courage it takes to be yourself. Pride is a time to honour the progress that has been made, recognise the work that still lies ahead, and stand together in support of the LGBTQ+ community ✨

At Childhood Tumour Trust, we believe everyone deserves to feel seen, valued, and accepted for who they are. We are proud to support a community built on inclusion, kindness, and respect, and we stand with those advocating for equality and positive change.

Wishing everyone a joyful and empowering Pride Month filled with love, visibility, and pride 🌈

11/06/2026

Update 2 places left

🚨 YOU HEARD IT HERE FIRST! 🚨

There are just 3️⃣ (yes, THREE!) spaces left for our Summer Camp running 25th–28th July! 🎉☀️

Camp is so much more than zip wires 🪢 and climbing walls 🧗‍♀️ it’s about making friendships 💜, connecting with other young people with NF1 🤝, being your true authentic self 🌟, and having LOTS of FUNNNN! 🎊😆

If Becky and George have convinced you 😉, don’t wait! ⏰

📧 Email [email protected] to grab one of the final spaces before they’re gone! 🎟️✨

11/06/2026

📢 Have Your Say on Rare Disease Care Coordination

Are you an adult living with NF1 or another rare condition, or a parent/carer of someone affected by a rare condition?

The CONCORD2 survey is exploring how care is coordinated for people with rare diseases and how services can be improved. Your experiences can help shape future care and support for families affected by NF1 and other rare conditions.

⏰ The survey closes on 19 June 2026.

🔹 Adults (18+) living with a rare condition:
https://ow.ly/u6OB50Z9OEj

🔹 Parents and carers:
https://ow.ly/HHIf50Z9OEl

The survey is anonymous, confidential and takes around 30 minutes to complete.

If we want better coordinated care for people with NF1, it's important that our community's voice is heard. 💚💙

The Concord2 survey deadline is Friday 19 June 2026, so have your say now before it closes!

Are you 18 or over, with a rare or undiagnosed condition? Or are you the parent or carer of a patient with a rare or undiagnosed condition? Have your say in this survey exploring and evaluating different ways of coordinating care for people affected by rare conditions.

The results of this survey can support improvements in how care is coordinated for people affected by rare conditions. The survey captures how the care of people affected by rare conditions is coordinated, and the costs and benefits of this to patients and families - it is run by CONCORD2 (COordiNated Care Of Rare Diseases 2) .

To complete the survey, click on one of the links below:

You are 18 or over and with a rare or undiagnosed condition 👉 https://ow.ly/u6OB50Z9OEj

If you are the parent or carer of a patient with a rare or undiagnosed condition 👉 https://ow.ly/HHIf50Z9OEl

Clicking through to these links, you will firstly be taken to the website with more information about the survey. If on reading this information you decide you do want to take part, you will then be directed to complete the survey online. It takes most people around 30 minutes to complete this survey.

You do not have to take part in the survey if you prefer not to; taking part in this survey is voluntary. You will not be asked to give your name or contact details, and we will not tell anyone that you have taken part in the survey. All information collected during the survey will be kept strictly confidential.

If you have any queries, contact the CONCORD2 Study Team at [email protected]

09/06/2026

Team #111 are taking on an incredible challenge, driving all the way from Chesterfield to Benidorm in a £600 car as part of the Rat Run!

The Rat Run is a slightly unhinged road trip where questionable vehicles attempt epic distances, all in the name of adventure and fundraising.

They’re raising money for two charities that mean a great deal to them:

💙 Childhood Tumour Trust – a cause close to their hearts as a family member lives with NF1.

https://www.gofundme.com/f/driving-from-chesterfield-to-benidorm

🎀 Breast Cancer Research – honouring the journey and strength of a loved one whose life has been affected by breast cancer.

https://www.gofundme.com/f/driving-from-chesterfield-to-benidorm-bzt96

If you’re able to support them, please consider making a donation. Even the cost of your morning coffee can make a real difference and help these amazing charities continue their vital work.

Thank you for your support!

09/06/2026

💚💙 NF1 Webinar: Musculoskeletal Abnormalities in NF1 💚💙

Did you know that NF1 can affect much more than the skin and nerves? Many people with NF1 experience musculoskeletal issues, including scoliosis, bone abnormalities, joint problems, pain and mobility challenges.

Join Dr David Stevenson, Professor of Pediatrics and Clinical Genetics at Stanford University and a leading expert in NF1 and RASopathies, for an informative webinar exploring the musculoskeletal complications associated with NF1 and what they can mean for individuals and families.

Please ask any questions you would like in the registration form. This is very patient orientated

📅 Wednesday 22 July
🕐 1–2pm Pacific Time (PST)
🇬🇧 9–10pm UK time (10–11pm if daylight saving time is being observed in California)

This is a fantastic opportunity to hear from one of the world's leading researchers in this area and to learn more about the bone and joint issues that can occur in NF1.

📲 Register using the QR code on the poster.

If musculoskeletal issues have affected you or your child, this webinar could provide valuable insights and information.
💚💙

07/06/2026

🛒✨ Add To Cart✨🛒

Have you checked out our new CTT Shop yet? 👀https://cttshop.org.uk/

We’ve packed it with goodies including t-shirts, hoodies, zip-up hoodies, activewear, bags, totes, mugs, bottles, tumblers, coasters, fridge magnets, stickers, key rings, car stickers, patches and more!

The best part….. many of our designs come in a range of colours and patterns, and some even feature our special 10 Year Anniversary logo 🎉

Whether you’re looking to rep CTT at the gym, on the road, at work, or with your morning coffee, there’s something for everyone.

Go on… your cart is waiting 🛒

06/06/2026

Our patron Rakie Ayola stars in a new drama,- Falling, on Channel 4, catch up with her in this interview.

What made you want to do Falling? I thought it was original. This is a gorgeous love story about a community I don't know much about, as I’m not Catholic. I know what church life is like, but I hadn't seen this community represented with this richness. I also got the chance to play somebody whose ...