News

Latest News

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

  1.  

 

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

 

 

GWAS study of CIDP

Members are encouraged to participate in a genome-wide association study of CIDP. Brief details can be found HERE

COVID Vaccination and GBS

Following on from the successful BPNS instigated study of GBS linked to COVID-19 infection - whhich found no evidence that COVID is a significant trigger for GBS, te society is now encouraging a similar collaborative study of GBS following COVID vaccination (any vaccine). Details can be found in the members pages - HERE (login to access)

Face to face out-patient policy for COVID

BPNS face-to-face outpatient policy 

Agreed at BPNS AGM, 6 November 2020, amended 16 January 2021. The latest version of this policy can now be found in the new 'Policies' page under 'About' on the society home page.

COVID-19 vaccination and peripheral nerve disease

The BPNS sees no reason for any patient with any peripheral nerve disease to avoid having any of the COVID-19 vaccines. A commentary on the topic my Mike Lunn can be found HERE. An information sheet giving the Societys official view for concerned patients is HERE.

No link found between COVID-19 and GBS

BPNS members have contributed to an important study led by Stephen Keddie and Mike Lunn showing no association between COVID-19 and GBS. <Link>

COVID-19

The COVID-19 epidemic raises some questions for patients being treated for neuromuscular disease. The following documents and links may help:

Guidance regarding immunosuppression - (Mike Lunn / Queen Square)

ABN COVID-19 documents index

BPNS advice for patients

International Master - Peripheral Nervous System Diseases

A top quality  international master class in peripheral nerve biology and disease based in Milan, Italy. The course involves five separate modules each of one week duration spread throughout a year.

Richard Hughes travel bursaries

The BPNS is delighted to announce the Richard Hughes bursaries in honour of Professor Richard Hughes, the first president of the BPNS. These comprise up to three travel bursaries a year, two to help fund a trainee to travel to the international Peripheral Nerve Society (up to £500 each) and one (up to £300) to attend the Spring meeting of the Association of British Neurologists (ABN).