How you can help
Your support makes a world of difference for children and families affected by Neurofibromatosis Type 1 (NF1).
Here are some impactful ways to get involved:
Fundraising ideas
Mufti Days at school or work
Host a coffee morning or picnic
5K any way
Walk, run, cycle, or even skip a 5K in your own style and invite friends and family to sponsor your efforts by setting up a page on JustGiving.
School and community events
Participate in awareness campaigns
NF Awareness Month (May)
NF Awareness Day (May 17)
School presentations
Join the NF Registry
What is the NF Registry and why is it so important?
The NF Registry is a powerful tool that collects health data from individuals living with Neurofibromatosis Type 1 (NF1), and all types of NF to support research and improve treatments. Although it was originally set up in the USA, it is a global registry, meaning that researchers and scientists from around the world can access it and use the data for studies in their own countries.
By joining the NF Registry, you’re contributing to a worldwide effort to better understand NF1, improve patient care, and drive breakthroughs in treatment options. Your participation can help shape the future of NF1 care – in the UK and around the world.