Helpline 07939 046 030


03 July 2020

We need your help to continue our Specialist Neurofibromatosis Support Network


Dear Supporter,

Nerve Tumours UK funds a unique Specialist Support Network for the 26,500 plus, children and adults, diagnosed with Neurofibromatosis (NF), one of the most common neuro-genetic conditions, that causes tumours to grow on nerve endings, and with many associated medical issues. A predominantly community-based service, offering both medical and non-medical advice and support, not just in clinics, but in schools, in employment, navigating the welfare system, and acting as advocates in tribunal and legal cases. These Specialists are highly qualified medical professionals and therapists and link with the many other professionals involved in the care of anyone with NF.

We are a “one-stop-shop” for people with NF and each member of our Network currently reaches out to between 500-3500 families per year, so thousands of families affected by Neurofibromatosis have a better quality of life because of this medical, practical and emotional support. New referrals come along each week, yet without our Specialist Support Network, there is no such support for these patients elsewhere. We anticipate that for each person with NF that we help, we also help on average 8 members of their wider network, thus helping hundreds of thousands.

Families affected by NF contact the team for a wide range of reasons as it is a very complex and varied condition. People are often both vulnerable and often isolated, and are immensely distressed by the current situation, as some of their complications make them more susceptible to catching Covid-19. NF is not well understood by most of the medical profession, most GPs will have only a handful of patients on their list, so their experience is likely to be limited and non-medical professionals may have little or no knowledge of the condition. Our team will link individuals to other resources thus helping to achieve some sense of control in a situation that feels potentially threatening and unsafe.

Therefore, over the past months, we have had no choice but to continue operating on a business as usual basis as best we can, running up all usual core costs, whilst our income streams have been totally depleted. This year we had planned to fill two vacancies and introduce two new posts, but given the current financial climate, we have had to put these plans on hold.

We are now asking for your help to get back on track, please. No matter how small the donation, every pound helps. As always, all monies received via this platform will be restricted to fund new regional posts.

Karen Cockburn,
Charity Dirtector