This conference concentrates solely on the treatment of Pernicious Anaemia. You will hear presentations from professionals with an interest in this field, most of whom have carried out research for or with the Pernicious Anaemia Society. We want the conference to be a forum for the exchange of ideas and experiences – from professionals and patients and we have built-in to the day workshops that makes this possible.

This conference has been made possible by the kind and generous donations from a number of members of the society, we have received no external funding, and I would like to thank those individuals on behalf of all members of the Pernicious Anaemia Society, for their benevolence.

We’ve had a number of telephone calls from members in the UK who are concerned that if the UK leaves the European Union without a trade deal there may be disruption to the supply of B12 injections. There are only three major producers of B12 in the world; two in China and one in France and so the UK, like all other countries who don’t have manufacturing facilities will rely on importing B12 from either France or China.
It has proved impossible to find out the exact arrangements that have been put in place to ensure an uninterrupted supply of our medicine – but the UK’s NHS and the UK Government have stockpiled medicines to guard against any disruption in the event of a no-deal Brexit. More information can be had here:
https://www.nhs.uk/conditions/medicines-information/getting-your-medicines-if-theres-no-deal-eu-exit/

The UK’s National Institute for Health and Care Excellence (NICE) produced their Shortlist of Topics that will go forward to have a Guideline either developed or updated. Unfortunately, our topic was not included in the shortlist. There are three stages that all topics go through before becoming a Guideline. The first stage is for a topic to be ‘Proposed’. The current list of Proposed topics, including the proposal for a Guideline on Pernicious Anaemia can be seen here:
https://www.nice.org.uk/guidance/proposed
A ‘long-list’ is then created from selected proposed topics that go to the next stage – ‘Topics in Development’. At this stage a thorough review will take place into the chosen topic. Topics in Development can be seen here:
https://www.nice.org.uk/guidance/indevelopment
Once the Development stage is complete (it takes around three years) the Developed Topic then goes to the next stage which is the ‘Consultation’ stage.
https://www.nice.org.uk/guidance/inconsultation
Following the consultation, the topic is once again thoroughly reviewed before being issued as a Guideline.
It took us three years to produce a report that satisfied NICE that there was a need for a Guideline on Pernicious Anaemia, and this time last year our request made it onto the Proposed list. There is, however, still a long way to go. The next thing we need to do is to get NICE to agree to move our topic onto the Development stage – and to do this we need your help.
We want you to contact your local MP and other elected representatives (MSP’s, AM’s & MLAs) and ask them to contact NICE and ask that the proposed Guideline on the Diagnosis and Maintenance of Pernicious Anaemia be made a priority. Letters should be addressed to:
Dr. Paul Chrisp
Director of Guidelines
NICE
10 Spring Gardens
London
SW1A 2BU
Email: ni**@ni**.uk

You may remember that a year ago we announced that we would be using some of the money in our Research Fund to sponsor a MSc student at the University of Kent. The thesis has now been completed by Shun Chang – “Cobamide extraction procedures for analysis of tissue and microbiome samples”.
The basis of the research was to try to understand why some patients need more frequent B12 treatment than others. Here’s what the summary says:
“The inconsistent differences in the distributions of these analogues, could explain why vitamin B12 deficient patients can develop different abnormalities and respond differently to treatments. Thus, a deeper understanding towards these lower ligand analogues will expand the potential targets for treating diseases associated with cobamides”.
This is one very small step, but a significant one, that helps understand why some patients with Pernicious Anaemia need more frequent treatment than others. The author thanked the PA Society for their support.

Following a wonderful response to our social media posts for London Vitality 100000 (www.vitalitylondon10000.co.uk) our initial 10 places purchased for the event filled up very quickly indeed! We are delighted to announce that we have secured a further 10 places, making our team for London a team of 20 runners! This is a truly special event which takes on the sights of our capital city, starting and finishing outside Buckingham Palace.

If you would like to apply for a place at London Vitality 10k on 25th May, please email: el***@pa***.uk for further info. Fundraising target through Virgin Money Giving is set at a minimum of £250.

We are also still looking for runners for Brighton Marathon on 19th April. If you might like the challenge of a full marathon we would love to have you on our team! Please get in touch: el***@pa***.uk

But it’s not all just about running! We are also applying for places in some of the major cycling events across the UK too so we will keep you updated as news arrives. We also have other sports, activities and general antics in which our members are participating in to raise awareness and vital funds.

If you would like to arrange a sporting event in your local community in aid of PAS please get in touch: fu*********@pa***.uk

We would love to hear from you!