Your Oracle chats appear here once you're signed in.
Sign up
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.
React
Members can read every reason.
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.
NHS-funded rehabilitation to be made more accessible for FND patients
I want the Government to make NHS-funded help for FND more widespread so that it can be accessed in more places, such as in Milton Keynes
Fund NHS access to Tofersen for all people with SOD-1 Motor Neuron Disease
We call on the Government to fund universal, NHS access to the life-extending medication Tofersen for all people who have been diagnosed with SOD-1 Motor Neuron Disease.
Fund compensation for late-diagnosed autistic and ADHD adults
We are calling on the Government to acknowledge and compensate late-diagnosed autistic and ADHD people failed by education, healthcare, and social care systems throughout childhood and adolescence.
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.
React
Members can read every reason.
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.
NHS-funded rehabilitation to be made more accessible for FND patients
I want the Government to make NHS-funded help for FND more widespread so that it can be accessed in more places, such as in Milton Keynes
Fund NHS access to Tofersen for all people with SOD-1 Motor Neuron Disease
We call on the Government to fund universal, NHS access to the life-extending medication Tofersen for all people who have been diagnosed with SOD-1 Motor Neuron Disease.
Fund compensation for late-diagnosed autistic and ADHD adults
We are calling on the Government to acknowledge and compensate late-diagnosed autistic and ADHD people failed by education, healthcare, and social care systems throughout childhood and adolescence.
