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My Hope For POEMS fundraising page

Bryony Eedy is raising money for Inflammatory Neuropathies UK

Camino de Santiago · 5 June 2026

POEMS Syndrome is a rare neurological condition that affects 200-300 people in the UK. Funds raised here will go towards a research fellow position at UCLH to continue the work to better understand, diagnose and treat this rare condition.

Story

POEMS Syndrome is a rare neurological condition that affects 200-300 people in the UK. Although it presents in similar way to other nerve conditions it is unique in being driven by the same kind of cells found in a blood cancer called myeloma. Once recognised, it can be therefore be successfully treated with many of the same drugs that are used for myeloma, and with good responses patients can expect to see an ongoing neurological recovery.

We are looking to raise money to fund this service in order to continue and expand this work. Funds would be used for:

-Development of a database review of clinical data, leading to ongoing research and guidelines

- Dedicated clinical research fellows to manage to manage the POEMS service and carry out research

- Education programme both for patients and doctors to improve awareness of POEMS Syndrome, prevent delays in diagnosis and improve treatment and management for patients in the UK and internationally.

Donation summary

Total
£1,786.34
+ £405.00 Gift Aid
Online
£1,786.34
Offline
£0.00

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