Nerve Tumours UK
Patient Groups / by m4rd / 274 views
The Neurofibromatosis Association, trading as Nerve Tumours UK, funds a unique Specialist Support Network to help the 26,500 plus children and adults, living in the UK, who are diagnosed with NF, the new medical group name for Neurofibromatosis Type 1 (NF1), NF2-related-Schwannomatosis (NF2) and Schwannomatosis (SWN), along with their carers, families, and wider support network. For every patient we help we estimate that we also help 8 further members of their network, so our reach stretches to supporting circa 212,000 people.
We provide support, advice and information for people with NF and the medical professionals involved in their care, via the Specialist Support Network, which comprises regionally based nurses, a national helpline, a fully accessible website incorporating a closed medical section, clinical guidelines, regional information days, medical guidelines and leaflets.
NF is one of the most common neuro-genetic conditions that causes tumours to grow on nerve endings and with many associated medical, physical and psychological conditions eg Scoliosis,60% have learning disabilities, and up to 70% are registered disabled.
People live in constant pain, are vulnerable and often isolated, and as this is a life-long genetic condition, it impacts hugely on their mental health.
You can check out their medical section for HCPs here https://nervetumours.org.uk/medical-information/medical-information-log-in
- Listing ID: 12193