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.

University College London Hospital (UCLH) has the only dedicated POEMS Syndrome clinic in the UK, and one of the only such services internationally. It is unique in being led by both neurologists and haematologists together with a dedicated Clinical Nurse Specialist, and acts as the UK’s national referral centre advising local hospitals on testing, diagnosis, treatment and rehabilitation. It has published numerous research studies in all aspects of POEMS Syndrome management, including guidelines on treatment and supportive management.

Current areas of research and development are:

- New tests for early diagnosis and better assessment of response.

- Novel treatment options, and investigating how to use new drugs for maximum response with minimum toxicity.

- Development of specialist physiotherapy services for neurorehabilitation.

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 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.