Fund more NF1 specialists and regular monitoring and support for NF1 patients
Provide funding for more Neurofibromatosis type 1 (NF1) specialists. Currently only two locations provide care. Monitoring is limited to yearly checks. My husband was diagnosed in 2018, had no follow-up, his NF1 tumour became cancerous (MPNST). He sadly passed on Christmas Eve 2025.
Wes Streeting
Health Secretary
Similar motions
Fund new-born screening and more treatment for MPS Hurler syndrome
Increase funding for MND research
Fund an NHS fast-track route for ADHD & autism diagnoses and treatment
Fund training on Neurofibromatosis and Functional neurological disorder
Review support for FND sufferers and waiting times for treatment
Fund more NF1 specialists and regular monitoring and support for NF1 patients
Provide funding for more Neurofibromatosis type 1 (NF1) specialists. Currently only two locations provide care. Monitoring is limited to yearly checks. My husband was diagnosed in 2018, had no follow-up, his NF1 tumour became cancerous (MPNST). He sadly passed on Christmas Eve 2025.
Similar motions
Fund new-born screening and more treatment for MPS Hurler syndrome
Increase funding for MND research
Fund an NHS fast-track route for ADHD & autism diagnoses and treatment
Fund training on Neurofibromatosis and Functional neurological disorder
Review support for FND sufferers and waiting times for treatment