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World Neurofibromatosis Type 2 Day and 40 Years of NTUK

19 May 2022

A celebration and call out to get involved, ask questions and join the community, here on social media, with Emily Owen

Emily is a member of the Board of Trustees.

She first encountered Nerve Tumours UK when she was diagnosed with NF2 in 1996. The charity steered her through the shock of diagnosis, and in learning to live with NF2.

Emily later realised that she was very fortunate to have been linked up with the charity so quickly, as many people with NF were not, and were left trying to navigate the world of NF alone.

Things have changed since then, as the charity has grown, along with social media, and now most people who receive a NF diagnosis can be put in touch with the charity quite quickly.

May 2022 is Nerve Tumour UK's 40th Birthday and a moment to celebrate. Over 40 years, the charity name may have undergone a few changes. but the essence of the charity remains the same: to support, encourage, and draw alongside people affected by NF. 

To mark this special day, we'll be posting short videos about the charity.

Not forgetting that today is a double celebration: Not only is it NTUK's birthday but it is NF2 Day!

A day for celebrating people with NF2.

Happy NF2 day, and Happy Birthday NTUK!

Emily Owen 

Some interesting facts and reflections: 

Happy Birthday, NTUK!  May 1982 – 40 years ago - NF group achieved charitable status

Who started the charity?

Families of those affected by NF. 40 years later, people living with NF are at the heart of all the charity does. Some things never change.

What does Claire Webb, who founded the charity and has a son with NF, think is one of the most important things the charity does?

Special Advisors

What would you say? Let us know! Please email: 

What would NTUK members like to see the charity doing more of?

Douglas says educating GPs

What would you say? Let us know! Please email: 

Happy Birthday NTUK!

Thank you to everyone who has been part of the charity over the last 40 years.

Here’s to the next 40!