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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.
React
Members can read every reason.
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.
Increase funding for MND research
Many people are being diagnosed with MND. More Government funding for research is needed.
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.
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.
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.
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.
React
Members can read every reason.
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.
Increase funding for MND research
Many people are being diagnosed with MND. More Government funding for research is needed.
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.
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.
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.
