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

Created by Mrs Hannah Addley-Jones
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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.

I believe that the processes involved in my husband's monitoring of NF1 were lacking and accessibility to sufficient services would have benefited both him and further patients with the condition. More frequent monitoring would mean we could better track an ongoing condition and react quicker to any changes in anyone affected, meaning better survival rates especially in the cases of aggressive occurrences such as MPNST. More readily available specialists would further this possibility.

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