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To all our members who had a stem-cell transplant: Anthony Nolan doing a survey about the support you received after your transplant.
Takes 10min and will provide really valuable information.
Of course - if you have turned to MDS UK - be it on the phone, via our website, our meetings or our facebook page - please make sure you mention that. The survey aims to capture all the organisations that are helpful to you.
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For people across the UK, having a stem cell transplant is just the beginning.

That's why we're carrying out vital research into the long-term support that patients and their families need the most.

With a better understanding of your experiences, we can inform policy-makers and the NHS, and ensure that they can provide the best possible care post-transplant.


We're conducting the survey above to give patients a voice about the long-term care you receive.

We'll use this data to influence decision-making, in the NHS and the government, and to shape services and support.

It'll only take about ten minutes to complete - but the impact it could have is absolutely huge. (So thanks very much!)

With your help, we can make sure all patients have access to the same high standard of care - for as long as they need it.

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MDS UK Patient Support Group shared Anthony Nolan's photo. ... See MoreSee Less

'In February 2001, at the age of 21, I was diagnosed with MDS. The doctors said I had 5-10 years to find a stem cell donor, otherwise it’d develop into leukaemia.

'By August that year, I’d found my match.

'And this year, I celebrated my 15th transplant anniversary.

'Since my transplant, I’ve competed in the World Transplant Games (volleyball and 1500 metres – I won a medal!). I ran with the Olympic torch during the Athens relay.

'I applied to join the police force, too; my dream job. At the time, I was worried that I just wouldn’t be able to work. But I’m still here, and I really love it.

'I also have two children, and a husband who’s really supportive. I don’t really look back – I’m very lucky.

'Two years ago, my donor Phil started messaging me on Facebook. We chat often, but we haven’t met up yet.

'I wouldn’t be here now if Phil hadn’t made that decision to sign up to the register. There could only be one person in the world who’s your match.

'Why wouldn’t you want to help them?'

- Lisa, stem cell recipient

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Bone Marrow Donation: All it takes to join the register is a bit of spit or a swab


Everything you need to know about MDS in our Patient Handbook


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Support for the Group

The MDS UK Patient Support Group is affiliated with the UK MDS Forum, the foremost UK specialists organisation focused upon MDS, providing information and advice on the status and progress with MDS research and treatment in the UK, as well as the MDS Foundation, Inc, based in the USA. The MDS UK Patient Support Group is also supported by major pharmaceutical companies and other organisations.

The MDS UK Patient Support Group is a founding member of the MDS Alliance, the international umbrella group for all national MDS support groups. The MDS Alliance is dedicated to sharing and improving MDS information and awareness between patients, globally.MDS UK Patient Support Group is a registered charity. Reg Charity No: 1145214

Prefer to speak on the phone? Call our helpline for an initial chat 02077337558

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