Is the Covid-19 pandemic over?

Not for people with aplastic anaemia it isn't. 

Donate to our Super Rare Appeal to fund research and support that will help more people with rare bone marrow failure to return to normal life.

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Covid-19 vaccine research

This time last year, people with aplastic anaemia were contacting us daily in sadness and frustration. As the world celebrated new Covid-19 vaccines, our community felt stuck, not knowing if the vaccines were safe or effective for them. 

But in November, we were able to announce that our initial findings indicate that Covid-19 vaccines do work for people with aplastic anaemia, but it is particularly important for them to have their second dose. People with this rare bone marrow condition could breathe more easily, and make decisions to see friends and family. 

Congratulations and thank you very much. This is a much needed and brilliant piece of work.

-Dr Shreyans Gandhi, consultant haematologist at King's College Hospital.

Funding this research cost £25,000 - that's around the same amount we raised during last year's Super Rare campaign.

There's still work to do. This year we will use public donations to:

  • Continue this research to look into the t-cell responses of patients, so we know the full picture
  • Investigate the immune response in patients after a third or booster vaccine dose
  • Publish and share authoritative, factual vaccine information for our community - so they can make informed decisions based on what scientists know about Covid-19, the vaccinations, and the way their immune system works. 

Please consider donating to fund this work, and help more people with rare bone marrow failure return to normality. 

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Being Super Rare

People like Paula need access to disease-specific information, from people who understand:

Initially Bradford, my local hospital, diagnosed me, they knew nothing about aplastic anaemia. Of course I googled the disease.

To my horror, on one website it stated a two year life expectancy! It felt like I went into a trance. I thought my life was over. I had always been told that life began at 40, but suddenly I thought mine would end very soon. My main concern was my children. 

I needed a bone marrow transplant and I am mixed race (English, Chinese, and West Indian) so when doctors looked at unrelated donors, it was a struggle.I remember one day I was receiving my transfusions in Bradford, and it was a rare time when a consultant spoke to me. I told him about not being able to find a donor, he said "It would have been easier if you'd had cancer" and said I wouldn't last long if I didn't find a donor. I cried so much that day.

A few weeks after I was diagnosed, I was on Google again and I found the contact details for The Aplastic Anaemia Trust. I ended up having a conversation with a lady that had aplastic anaemia and had a successful transplant, her sister was her donor.

It was just such a relief that someone knew what I was experiencing and to hear that you can recover from such a horrible disease.

Donate now

Ellie Dawes