The Pernicious Anaemia Society

The Pernicious Anaemia Society We are a registered charity that exists to provide information, help and support to sufferers of Pernicious Anaemia (PA), including their families and friends.

We also strive to improve current and future diagnosis and treatment of Pernicious Anaemia.

At the Pernicious Anaemia Society, everything we do comes back to one core mission:💛 To improve the lives of people livi...
15/04/2026

At the Pernicious Anaemia Society, everything we do comes back to one core mission:

💛 To improve the lives of people living with Pernicious Anaemia through support, education, research, and advocacy.

We know that PA is so often misunderstood. Many of our members spent years searching for answers, being misdiagnosed, or told they were “fine” when they knew they weren’t.

That’s why this community matters so much.

We’re here to change that story - for everyone.

Through our work, we aim to:
- Raise awareness of PA and the seriousness of B12 deficiency
- Support patients and families navigating symptoms, diagnosis, and treatment
- Challenge outdated thinking in clinical settings and push for better training
- Fund research into the symptoms and impacts that are often overlooked
- Create community so no one feels invisible or alone in their experience

Whether it’s a friendly voice on our helpline, an online support group where people finally feel understood, or a personal story that gives someone hope - PAS exists to connect, empower, and uplift.

We are patients, volunteers, researchers, clinicians, and advocates. And together, we’re building something powerful: a future where everyone with PA is diagnosed sooner, treated properly, and supported fully.

Thank you for being here, for sharing your stories, and for supporting our mission - we couldn’t do it without you.

🌐 Learn more about our work and how to get involved:
https://pernicious-anaemia-society.org/aboutus/

🎂 20 years ago, PAS was founded by patients who weren't being heard.Two decades on, that mission hasn't changed. But a g...
14/04/2026

🎂 20 years ago, PAS was founded by patients who weren't being heard.

Two decades on, that mission hasn't changed. But a great deal else has.

In 20 years, PAS has:
Built a global community of patients, carers and professionals
Developed education resources now available on the NHS Learning Hub
Funded research that puts patient experience at the centre
Supported the development of international guidelines
Trained healthcare professionals to recognise and treat PA
Given thousands of people the language and evidence to advocate for themselves

The work is far from finished. Diagnosis still takes too long. Treatment still doesn't fit everyone. And too many people are still told their symptoms are "just" something else.

But 2026 feels different.

This year, under the B12Alliance banner, PAS is taking the case for better PA care to Parliament. We're building a national awareness drive. We're investing in research. And we're doing it all with the voices of our community at the centre.

If you believe patients deserve better - please support us.

💜 Donate to The B12 Alliance Parliamentary Reception & National Awareness Drive: 🔗 https://www.justgiving.com/campaign/b12alliancewestminster

🔗 Or become a member at pernicious-anaemia-society.org/member

✨ 20 Years of Education, Research & Support. This Year Things Change.

14/04/2026

Anemia is the second-leading cause of disability globally, disproportionately affecting women and young children — 40% of children under 5 around the world have anemia. Anemia affects one in three females aged 10 to 54.

New research published in The Lancet Haematology analyzed updated Global Burden of Disease data to understand the impact of the global anemia burden from 1990 to 2023: http://ms.spr.ly/6187Q4UHb

The findings reveal a higher anemia burden than previously recognized and emphasize the need for strengthened monitoring and targeted interventions, particularly in regions where burden has been previously underestimated.

At PAS, we're always grateful for your generous support and donations, which fuel our mission to raise awareness and sup...
13/04/2026

At PAS, we're always grateful for your generous support and donations, which fuel our mission to raise awareness and support those affected by pernicious anaemia.

While donating directly with Gift Aid is fantastic and greatly appreciated, we're thrilled to introduce another way for you to support us while also getting something back in return!

🌍 We've partnered with http://charitablebookings.com/ , a platform that allows you to select The Pernicious Anaemia Society as your chosen charity when you make your travel and holiday bookings.

By booking through http://charitablebookings.com/ , you'll still enjoy the same great rates and deals offered directly by the companies, but a small percentage of your booking will be donated to PAS! ✈️

So, if you're planning your next getaway or travel adventure, why not check out http://charitablebookings.com/ and nominate The Pernicious Anaemia Society as your charity of choice? It's a simple way to support our cause while booking your well-deserved holiday. 🏖️

Thank you for your continued support!

Support our charity by becoming a member or donating regularly. Follow our page for more insights and useful information about PA!








Following the success of last year’s Camino de Santiago sponsored walk, where Pernicious Anaemia Society Trustee Andy Em...
12/04/2026

Following the success of last year’s Camino de Santiago sponsored walk, where Pernicious Anaemia Society Trustee Andy Emerson and friends walked 128km, climbed 2440 metres and raised over £1400 for the society, the group are about to take on another challenge.

Between 12-17 April 2026, Andy and his friends will bicycle over 200 miles around the Rioja region of Spain, climbing 7782 feet.

Sponsor Andy and his friends, at their Just Giving page. Proceeds support the Pernicious Anaemia Society.
https://www.justgiving.com/campaign/andyriojacycle

If you would like to learn more about Pernicious Anaemia and how The Pernicious Anaemia Society works towards better diagnosis, treatment, and research, please visit our website.
https://pernicious-anaemia-society.org/

💉 100 years ago, a treatment for Pernicious Anaemia changed everything.In 1926, raw liver therapy became the first known...
09/04/2026

💉 100 years ago, a treatment for Pernicious Anaemia changed everything.

In 1926, raw liver therapy became the first known treatment for PA. Unpleasant, extreme, and hard to tolerate - but for many, it was lifesaving. A discovery so significant it led to a Nobel Prize.
A century later, theoretical treatment has advanced beyond recognition.

But as this year's BMJ Medical Anniversaries article highlights, for too many people with Pernicious Anaemia, the journey to diagnosis and proper care still falls short.

Misdiagnosis. Late diagnosis. Undertreatment. Not being listened to.

A hundred years on, that shouldn't still be the story.

This anniversary is a moment to reflect on how far medicine has come - and how much further it still needs to go for people living with PA today.

Better awareness. Better diagnostic practice. Treatment that genuinely meets individual needs.
That's what PAS has been working towards for 20 years. And in 2026, we're more committed than ever.

💜 Help us raise awareness and take PA to Parliament - support The B12 Alliance Parliamentary Reception & National Awareness Drive: https://www.justgiving.com/campaign/b12alliancewestminster?utm_medium=CA&utm_source=CL

✨ 20 Years of Education, Research & Support. This Year Things Change.

📖 Read the BMJ article here: https://www.bmj.com/content/392/bmj.s58

Support our work and help us make the next century count: 🔗 pernicious-anaemia-society.org

If you have pernicious anaemia and would like support or to chat with others who have this illness, please join the Scot...
08/04/2026

If you have pernicious anaemia and would like support or to chat with others who have this illness, please join the Scotland support group online, 22 May at 7:00pm.

The topic for this meeting is Patient Advocacy, information and tips on dealing with your Doctors

https://pernicious-anaemia-society.org/event/scotland-online-support-group-meeting/

These meetings are an excellent way to meet other members of the society, share experiences, learn of how PA has impacted on their lives and how they have developed coping strategies to deal with the ongoing symptoms in a welcoming and friendly environment.

Whilst Karen is based in Scotland, you don’t have to live in that area to attend. It doesn’t matter where you live as this is a Zoom meeting and all members are welcome to attend.

Hope you can make it!

07/04/2026

🔬 Meet Rachel Barnes - registered advanced nurse practitioner, primary care professional, and PhD researcher at the Quadram Institute.

Supported by PAS funding, Rachel's research focuses on improving and enhancing the patient experience around B12 treatment.

In this reel, she talks about self-administration - an area that matters deeply to so many in our community, and one that sits at the heart of improving access, independence, and quality of life for people with Pernicious Anaemia.

👀 Want to hear more from Rachel? Member can look out for updates on her current research project in our newsletters.

Not yet a member? Join PAS to make sure you don't miss out - plus get access to trusted resources, education, and member-only content all year round.

✨ 20 Years of Education, Research & Support. This Year Things Change.

🔗 Join us at https://bit.ly/4bT3LCN

🔴 Understanding Pernicious Anaemia Symptoms 🔴When it comes to Pernicious Anaemia, recognising the symptoms is crucial. H...
06/04/2026

🔴 Understanding Pernicious Anaemia Symptoms 🔴

When it comes to Pernicious Anaemia, recognising the symptoms is crucial. Here's what you need to know:

1. Neurological Focus: PA primarily exhibits neurological and anaemia symptoms. Surprisingly, neurological signs often precede anaemia, so don't dismiss the condition if anaemia isn't immediately evident.

2. Gradual Onset: Symptoms typically develop gradually over the years, leading to potential misinterpretation as signs of ageing or a hectic lifestyle.

3. Varied Severity: Symptoms vary widely in intensity from person to person, with some experiencing numerous indicators while others may have only a few.

4. Overlap with Other Conditions: Many symptoms overlap with those of other illnesses, contributing to delayed diagnosis—a significant challenge for patients.

Consider the following symptoms:
- Numbness, pins and needles, or a burning sensation in the extremities.
- Muscle fatigue, cramping, or restless leg syndrome.
- Unexplained hair loss.
- Persistent headaches.
- Feelings of dizziness or lightheadedness.
- Changes in mood, including irrational anger, behavioural shifts, or signs of depression.
- Gum bleeding or mouth ulcers.
- Unexplained fatigue or exhaustion.
- Intermittent diarrhoea.

Remember, this list isn't exhaustive. If you're experiencing any of these symptoms, it's essential to explore further. Reach out to us to learn more about Pernicious Anaemia and its diverse array of symptoms. Don't hesitate to seek support and information—we are here to support you and your health care professional.

Support our charity by becoming a member or donating regularly. Follow our page for more insights and useful information about PA!








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Ipswich
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