Meetings

Hereditary Neuropathy Serine Trial

 UCL are starting a trial of L-Serine in Hereditary Sensory Neuropathy Type 1 due to mutations in the SPTLC1 or SPTLC2 genes. An online patient infomation day is being held on the 18th April 2023 - details can be found in the attached documents - Flyer - Letter

Kings Neuromuscular Symposium 2024

The 22nd annual King's Neuromuscular Disease Symposium, Friday 26th January 2024, is now open for registration

The format will be a hybrid of face-to-face or online webinar. To encourage a live audience, we are offering free lunch for those attending in person (if pre-reserved). Registration will be the same cost whether you attend in person or virtually.

The venue will again be the stunning contemporary atrium and lecture theatre of the Fetal Medicine Research Institute at King’s College Hospital, London SE5 8BB, just next to Denmark Hill station.

09.00 – 09.25     Registration and tea/coffee

Session 1              

09.25 – 09.30     Welcome from the organisers

09.30 – 10.00     Peripheral Neuropathy in Complex Genetic diseases: Approach to Diagnosis.  Dr Alex Rossor,

                             St Thomas’ Hospital

10.00 – 10.30     Lymphoma, Paraproteins and Neuropathies. Dr Shirley D’Sa, UCLH. 

10.30 – 11.00     Clinical and EMG guide to Spontaneous Motor Hyperexcitability.    Dr James Bashford, KCL

11.00 – 11.25     Tea/coffee – Atrium

Session 2              

11.25 – 11.55     Immunosuppression in Neuromuscular Diseases. Dr Aisling Carr,

                             Centre for Neuromuscular Diseases, National Hospital for Neurology and Neurosurgery

11.55 – 12.35     Richard Hughes Lecture.  Treatment of Neuropathic Pain. Prof Nadine Attal, Paris

12.35 – 13.05     Ulnar Neuropathy. Prof Simon Podnar, Ljubljana 

13.05 – 13.50     Lunch – Atrium

Session 3              

13.50 – 14.20     Physiotherapy Management of Neuromuscular Disorders.  Jo Reffin, KCH

14.20 – 14.50     How to Interpret a Muscle and Nerve Biopsy Report.  Dr Matthew Clarke, UCLH

14.50 – 15.15     Tea/coffee – Atrium

Session 4            
15.15 – 15.45     Congenital Myopathies for the Adult Neurologist.  Dr Anna Sarkozy, GOSH

15.45 – 16.15     Differentiating between Acquired and Genetic Myopathies.  Dr James Lilleker, Manchester

16.15 – 16.25     Concluding remarks and Finish

Registration HERE

Organisers: Dr Rob Hadden, Dr James Burge, Dr James Bashford & Dr Ahmed Abbas

For Queries please contact our administrator: Ms Lai Tsang  kch-tr.KNMS@nhs.net

New UK Charity for Peripheral Neuropathy

The BPNS wish to facilitate setup of a new charity for peripheral neuropathy in the UK.  There is no charity or association in the UK which supports people with all the many causes of peripheral neuropathy.  Only a few specific causes of neuropathy have a UK charity, such as CMT-UK, GAIN and Diabetes UK.  There is no UK charity to support idiopathic neuropathy, painful small fibre neuropathy (except general pain charities), brachial neuritis, carpal tunnel and entrapment neuropathies, chemotherapy neuropathy (except cancer charities), etc. Several people have come forward to assist with this and work is progressing to get the new charity up and running.

New NHSE commissioning policies for rituximab and IVIg

• We are pleased to announce that, largely due to the efforts of our president Prof Lunn, rituximab is now approved for treatment of IgM paraproteinaemic demyelinating peripheral neuropathy (anti-MAG phenotype, with or without anti-MAG antibodies): 1910-rituximab-for-treatment-of-PDPN-policy-v2.pdf (england.nhs.uk).  Whilst we have hitherto been able to treat some patients with rituximab by sending them to a haematologist, this was not possible if the bone marrow showed insufficient evidence of underlying lymphoplasmacytic lymphoma.  These patients can now be treated, regardless of bone marrow result, either by you or by your friendly haematologist, under the new commissioning guidance. 
• Also thanks to Prof Lunn (alongside non-neurology colleagues), the updated IVIg commissioning policy is now available: Commissioning-Criteria-Policy-for-the-use-of-Ig-Version-Finala.pdf (mdsas.com).  Newly commissioned diagnoses of relevance to peripheral nerve now include acute autoimmune autonomic ganglionopathy, and neuromyotonia.
• Finally, with thanks largely to the efforts of Dr Rinaldi in Oxford, rituximab can now be used for the treatment of autoimmune nodopathies (with nodal/paranodal antibodies):  NHS England » Rituximab therapy for the treatment of nodal/paranodal antibody positive inflammatory/autoimmune neuropathy in adults and postpubescent children.