The Pernicious Anaemia Society
What We Do
We provide information, help and support to sufferers of Pernicious Anaemia (PA), including their families and friends and strive to improve current and future diagnosis and treatment of Pernicious Anaemia by: providing information to health professionals, engaging in research with the health research community, lobbying decision makers and working hard to change the way in which PA is diagnosed and treated.
Member Support
We provide help and support to sufferers of Pernicious Anaemia (PA), including their families and friends via our dedicated Helpline and email support, engage with our members on social media and facilitate a very active online forum where people share their experiences living with Pernicious Anaemia and ask for advice from others. We also attend Employment Tribunals and PIP appeals as Expert Witness in response to member requests.
Support Groups
We have support groups in England, Wales, and the US where members meet face-to-face or online to discuss issues living with Pernicious Anaemia and help alleviate the isolation often experienced by patients with Pernicious Anaemia.
Patient
Information
We provide information leaflets, articles and information booklets that explain in plain English what Pernicious Anaemia is and outline some of the likely problems and consequences that the newly diagnosed patient can expect to encounter.
Professionals Information
We provide information to health professionals by providing information and factsheets, connecting healthcare professionals to other professionals and speaking at international conferences as well as at meetings of specialized medical professionals.
Research
We participate in research and studies by universities and researchers, exploring issues surrounding Pernicious Anaemia and assist in recruiting participants for research studies and surveys. We also gather and analyse data and make this data available to medical professionals to aid their research.
Lobbying
We lobby the political and medical establishments to encourage them to call for a complete review of how Pernicious Anaemia in particular and B12 deficiency in general is diagnosed and treated and engage with decision makers to address issues our members are facing.
Raising
awareness
We speak with the media, including the BBC and the Wall Street Journal, about the issues facing Pernicious Anaemia sufferers and publish awarness raising articles. We also support members who participate in sponsored athletic events and maintain a public presence on the web and social media.
Conferences
We organise conferences and seminars for healthcare professionals and patients where medical professionals can share and discuss their research into B12 and Pernicious Anaemia.
Documentary & Newsletter
We have produced a documentary, Living with the Fog, which is available on our website and YouTube channel and are working on a new documentary to raise more awareness. We provide our members with a quarterly newsletter to keep our members up to date on all developments.
Library and Archive
We have an extensive library of articles, presentation slides, videos and information sheets relating to Pernicious Anaemia.
Become a Member!
With your help we can continue to do our valuable work, supporting those that need it and campaigning to secure future improvements in detection and treatment of this illness. The more members we have the bigger our voice will be in getting the way in which Pernicious Anaemia is diagnosed and treated thoroughly reviewed. Join us and help us bring about this much needed review!
Our Values
We are focused on our service users. Our ethos reflects this and we concentrate on the dignity of individuals who have the right to participate in the design and monitoring of their treatment. Our principels are based on respect for the right and dignity of our service users to choose their preferred treatment method that allows for a flexible and individually tailored regime that is focused on the individual needs of the patient in order that they can best manage their condition.