Map of National
State Logo
StateMapMotion

Fund more NF1 specialists and regular monitoring and support for NF1 patients

National
·35 reactions·100% agree

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

Wes Streeting

Health Secretary

Health Secretary

React

Where do you stand on this motion?

Reasons for3
Reasons against0

See what others are saying

Members can read every reason.

Similar motions

Fund new-born screening and more treatment for MPS Hurler syndrome

Improve early diagnosis and access to treatment for children with MPS Hurler syndrome, including clearer referral pathways and new-born screening, so children are not diagnosed too late to benefit from treatment.

15Reasons
National

Increase funding for MND research

Many people are being diagnosed with MND. More Government funding for research is needed.

36Reasons
National

Fund an NHS fast-track route for ADHD & autism diagnoses and treatment

We urge the Government to fund a fast-track route in the NHS for ADHD and autism diagnoses and treatment, to ensure urgent access to care, regardless of whether diagnosed privately or publicly. We believe no one should face delays, gaps in medication, or be denied essential support.

30Reasons
National

Fund training on Neurofibromatosis and Functional neurological disorder

Fund training for doctors to further understand the basics of Neurofibromatosis and function neurological disorder so patients can receive better help without needing to be transferred to a specialist which could be miles away.

23Reasons
National

Review support for FND sufferers and waiting times for treatment

I am a Functional Neurological Disorder (FND) sufferer and have been since 2023, however there are people that have suffered far longer than me, and we all feel as if there is absolutely no support from the NHS unless you push for it, and travel miles to find it. It is simply not good enough.

4Reasons
National
HelpPrivacyContact
Map of National
State Logo

Fund more NF1 specialists and regular monitoring and support for NF1 patients

National

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.

National
35 reactions·100% agree
Wes Streeting

Wes Streeting

Health Secretary

Health Secretary

React

Where do you stand on this motion?

Reasons for3
Reasons against0

See what others are saying

Members can read every reason.

Similar motions

Fund new-born screening and more treatment for MPS Hurler syndrome

Improve early diagnosis and access to treatment for children with MPS Hurler syndrome, including clearer referral pathways and new-born screening, so children are not diagnosed too late to benefit from treatment.

15Reasons
National

Increase funding for MND research

Many people are being diagnosed with MND. More Government funding for research is needed.

36Reasons
National

Fund an NHS fast-track route for ADHD & autism diagnoses and treatment

We urge the Government to fund a fast-track route in the NHS for ADHD and autism diagnoses and treatment, to ensure urgent access to care, regardless of whether diagnosed privately or publicly. We believe no one should face delays, gaps in medication, or be denied essential support.

30Reasons
National

Fund training on Neurofibromatosis and Functional neurological disorder

Fund training for doctors to further understand the basics of Neurofibromatosis and function neurological disorder so patients can receive better help without needing to be transferred to a specialist which could be miles away.

23Reasons
National

Review support for FND sufferers and waiting times for treatment

I am a Functional Neurological Disorder (FND) sufferer and have been since 2023, however there are people that have suffered far longer than me, and we all feel as if there is absolutely no support from the NHS unless you push for it, and travel miles to find it. It is simply not good enough.

4Reasons
National
HelpPrivacyContact