A new diagnosis of Neurofibromatosis Type 1(NF1) can be devastating for a family. Most will not have heard of NF before diagnosis and will not know where to get help. The Neuro Foundation provides the only support service in the UK for anyone with NF1. We receive no government funding and large areas of the country have no regional support. You can help fund #OneMoreNurse and extend our network to make sure we provide crucial guidance to those who need it and to their personal support networks.
The Neuro Foundation is the only source of help, information and advice for those diagnosed with NF1 in the UK. We provide support needed for individuals, their families, teachers, employers, health professionals, etc. There are large areas of the country that are not covered by our network at present. We need to provide at least seven additional NF Nurses to cover the entire country. If we can crowdfund just #OneMoreNurse, then we will have improved the lives of thousands.
An NF Nurse's caseload can be as high as 3000+.Each newly diagnosed person with NF1, can have as many as 8 people who will also need support - carers, parents, siblings, teachers, medical staff, etc. Extrapolated, this can equate to over 26000 people, who will benefit from just one NF Nurse. We need more than just #OneMoreNurse - but it is a basis from which to start. Without this crucial medical and emotional support provided by the NF Nurses, people with NF1 will have nowhere else to turn.
NF is one of the most common neuro-genetic conditions yet many healthcare professionals do not understand the condition. NF Nurses provide a crucial role in educating medics, helping them understand the complexities of NF1. This devolution of information and support should ensure that there is less demand on public funding. They empower and inform their patients- as well as their patient's personal support network and help those with NF1 to achieve their potential and live life fully.