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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.

The chief executives of several related charities have kindly offered to give infomral advice and support: GAIN, CMT-UK and the (USA based) International Foundation for Peripheral Neuropathy.  The next step is we need a small number of keen UK patients with neuropathy to do the work, ideally with relevant skills such as running a business/company/charity, accountancy, fundraising, website programming or public relations.  Volunteers would need some spare time and to be sensible organised people.  We need quality not quantity.  Interested individuals can make contact by email: info@neuropathy.org.uk.  BPNS members have been emailed with the link to the poster so they can print and put up in neurology and neurophysiology outpatient departments: https://www.bpns.org.uk/data/files/Public/NeuropathyOrgPoster.pdf

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).