Celebrating World NF Day: The Importance of Our Services

The Importance of World NF Day
and World NF Awareness Month May

Every May, the NF Community comes together to recognise World NF Awareness Month, a time dedicated to raising awareness, support and hope. NF is classified as a rare neuro-genetic condition and impacts millions of people worldwide, making awareness and education of the condition critically important.

Understanding Neurofibromatosis

Neurofibromatosis is a group of genetic conditions that cause tumours to grow on nerves throughout the body. These tumours are usually non-cancerous, but they can lead to serious complications including hearing loss, vision problems, bone deformities, learning disabilities, chronic pain amongst many other conditions. Because symptoms vary greatly from person to person, many individuals face delayed diagnosis and misunderstanding about their condition.

Our Services

Nerve Tumours UK funds a Unique Specialist Support Network to help the 26,500+ people living in the UK who are diagnosed with NF (NF1, NF2 & SWN), along with their carers, families and wider support network, including the many medical professionals and other allied healthcare professionals who support those with the condition.

We provide support, advice and information via our Specialist Support Network, which comprises regionally-based nurses, a national helpline, fully accessible website, social media support groups, clinical guidelines, regional information days, medical guidelines and leaflets.

The Importance of Our Services.
Reflections By Our Community

Anne mother of a daughter with NF1 May 2026

My daughter died when she was 4 (she would now be 28 so it was a long time ago) and had very extreme NF1. Her doctor was a paediatrician but not a NF1 specialist.  I wish I had had your charity on my doorstep then!

Jodi mother of a daughter with NF1 May 2026

My daughter was born five weeks early on 29 August 2018, and from the very beginning she was our perfect little addition — a tiny, beautiful baby who brought so much love into our lives.

At just seven weeks old, she began to struggle with feeding, and we were admitted to Sheffield Children’s Hospital. It was there that a paediatric doctor, whose care and attentiveness changed everything for us, noticed marks on her skin and gently introduced us to a condition we had never heard of before — Neurofibromatosis. After genetic testing, that possibility became our reality.

What followed was a whirlwind of appointments and difficult news. Rosie was diagnosed with an optic glioma, glaucoma in her left eye, and additional tumours affecting her tongue, throat, and neck. As a parent, it was overwhelming, frightening, and at times incredibly difficult to process.

We were referred to the specialists at Ryegate Children’s Centre, where we met Clare Dhillon, specialists, and the wider neurodisability team. From that moment on, we were no longer facing this journey alone.

The care we have received at Ryegate has been nothing short of extraordinary. Not only have they supported Rosie medically, but they have also supported me emotionally through some of the hardest moments of my life. They take the time to truly understand Rosie — not just her condition, but who she is as a little girl — and they treat us both with kindness, patience, and respect.

There have been times when I have struggled to come to terms with Rosie’s diagnosis, but the team have never made me feel alone. They consistently go above and beyond, always ensuring that I feel informed, listened to, and reassured. Their compassion has helped ease so much of the worry that comes with a diagnosis like this.

Because of them, my child is not just receiving care — she is being cared for in the fullest sense of the word.

To Clare, the specialists involved, and every member of the Ryegate team: thank you. Your dedication, empathy, and support mean more than words can ever fully express. You have made an immeasurable difference to our lives, and for that, we will always be grateful.