We have set up this "user" as the communications team from the Pernicious Anaemia Society. We are not moderators on this forum and will not be answering any questions or commenting on specific circumstances or posts for individuals. This is a forum for discussion amongst users and a community for support and a space for people to talk about PA and B12 deficiency symptoms generally..
Since PAS host this forum and occasionally people post questions about what the Society does, we will aim to answer those questions and share information about some of the work we do. We hope as a result you will consider becoming members (if you are not already) to help us raise awareness, carry out research and improve the diagnosis and treatment of Pernicious Anaemia.
The Society was set up to focus on people with PA, which was (and still is) misdiagnosed and under-treated. B12 deficiency is one of the symptoms of PA but there are other issues if you have pernicious anaemia and raising awareness of these alongside treating B12 deficiency symptoms also needs to be addressed. Many people have been diagnosed with a non dietary B12 deficiency due to malabsorption and possibly, in fact probably, have PA too even without a diagnosis. We all know the current test for PA is only accurate if positive.
One of the most important things PAS does is provide a cohort of patients with PA, suspected PA, malabsorption issues, and B12 deficiency symptoms to researchers. We are known for our quality contributions to research and for funding and supporting papers which are valuable to moving things forward in terms of the science, psychology and day to day living with experience of PA. Becoming a member means you will get the invitations to take part in surveys and research (not just UK based). It is only credible research that changes opinions and attitudes in government and healthcare.
This week we have submitted a response to the draft NICE guidelines on Vitamin B12 Deficiency. We spent hours on this and worked with experts to represent the best interest of our members in our response. We also received many emails from members and reviewed and incorporated their views. PAS was instrumental in getting the guidelines commissioned and we believe that our views and suggested amendments will be considered seriously by the NICE committee.
We do a huge amount of work behind the scenes with a very small team of volunteers. We are totally funded by membership subscriptions and donations. We have a workplan of priorities to meet our charity goals and mission and our recent strategic overhaul will start to show in the work we do going forward. We focus on conducting research and on lobbying for change. We also provide a help desk by phone and email, expert witnesses for hearings and court,as well as information, fact sheets and newsletters to our members. We run seminars, support groups and provide education to health care professionals. We have an active social media team on Facebook, Instagram and LinkedIn and your support by following and re-posting our messages would help raise awareness and be much appreciated.
There are many social media groups out there which provide information and advice about B12 deficiency and PA, some are accurate and helpful, some are woefully misleading. PAS is committed to being a patient advocacy group and fighting for better understanding of PA, for which B12deficiency is one of the debilitating symptoms. We are the only international charity solely representing the issues related to this auto-immune condition.
PAS works closely with a number of B12 charities and organisations who focus on B12 deficiency, as well as universities and research experts in B12. PAS was instrumental in supporting CluB-12 a world-wide group of research scientists when it started up. We meet regularly with groups involved in B12 research and education based all over the world. We currently support two PhD research students and are part of a joint bid for research funding from the UK government.
We recognise that all of these organisations and individuals who are banging the B12 drum have a role to play and by working together we can all do our thing to raise awareness while ensuring that our own message and matters which are important to PA patients are not overshadowed by a general and less specific B12 deficiency message especially where there is so much misunderstanding in health care and the media.
There are 30,000 posters on this forum which PAS hosts and supports. If every one of them made a donation or became a member we could make a huge difference to funding more research, updating our website, train helpline volunteers, certify more expert witnesses, roll out our education programme etc. Membership is open to everyone worldwide whether or not you have PA, (or whatever it is called in your country), are a carer, a health care professional or just want to support our cause.
Is the Pernicious Anaemia Society commenting on the proposed new NICE guidelines?
Hello from a (UK based) Pernicious Anaemia sufferer...
Is it Pernicious Anaemia or not.
pernicious anaemia without actual anaemia
