Sarah Owen MP – Today is world Neurofibromatosis awareness day

Today is world Neurofibromatosis awareness day. It’s a cause close to my heart as about 5/6 years ago I met wonderful

Vanessa Martin

who worked to set up the Childhood Tumour Trust the NF charity.

When I first met Nicole and Vanessa I had no idea how to say Neurofibromatosis correctly let alone what it was. So thank you both for educating me and congratulations on all the work you’re doing for other children with NF and their parents.
The photo of us all is from when we lobbied together to secure the first ever Parliamentary debate on Neurofibromatosis and the awareness raising has gone from strength to strength thanks to campaigning parents, people with NF and supporters.

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