MDS UK Patient Support Group 

Welcome to MDS UK. If you’re affected by Myelodysplastic Syndromes, you’re not alone.
We're here to help you make sense of diagnosis, treatment and living with MDS. You'll find trusted information, online support meetings with MDS specialists, one-to-one support, and a community of people who understand what you're going through.
MDS Support UK announcing new website coming early 2027

Your guide to MDS

Browse information and guidance to help you move forward after diagnosis.

Are you newly-diagnosed with MDS?

Try our 'Quick Links Guide' to go straight to the pages, articles and videos on our website that we believe are the most useful in those early days following diagnosis.

Questions for your healthcare team 

Medical appointments can involve a lot of information. Our pre-prepared list of questions can help you get the information you need from your healthcare team.

Coping with a diagnosis of MDS

Watch senior psychotherapist Surabhi Chaturvedi’s video on the emotional impact of MDS. She discusses adjustment and ways to cope and live well.

MDS Patients Guide (2024)

 

Download our comprehensive MDS Patient Guide, covering the different types of MDS, diagnosis, treatment, and more. Co-written by the MDS UK Patient Support Group and Leukaemia Care, this updated edition was released in April 2024.

If you'd prefer a hard copy, email us at admin1@mdspatientsupport.org.uk and we'll be happy to post to you.

Upcoming Support Meetings 

Welcoming online meetings to share experiences, ask questions, and get support.

13 Nov (Fri) | 2.00pm

CMML Support Meeting
Hosted by Leukaemia Care

17 Nov (Tues) | 10.30am

Webinar: 'The progression of MDS'
With Dr Catherine Hockings, Consultant Haematologist

24 Nov (Tues) | 10.30am–12.30pm

MDS Peer Support Meeting

General meeting

15 Dec (Tues) | 10.30am–12.30pm

MDS Peer Support Meeting

General meeting

Join MDS UK to access online meetings -

membership is free

Membership is required to come to Support Meetings, so if you're not a member yet, click the red button to sign up (it's free and easy to join). For any questions, call 020 7733 7558.

Interested in fundraising for MDS UK?

Browse ideas below and email us at info@mdspatientsupport.org.uk — we’d love to hear your plans.

Fundraise your way for MDS UK!

Every fundraiser makes a difference. Our Step-by-Step Guide and Fundraising Toolkit can help you get started.

Great South Run 2026

Run the Great South Run on October 18th 2026. Free registration with MDS UK just pledge to raise £250+

 

Great North Run 2026

Run the Great North Run on September 13th 2026. Free registration with MDS UK just pledge to raise £350+

 
Connect with 1,000+ members affected by MDS & CMML for peer support, shared experiences, and a safe space to ask questions.

Watch : 'Knowing your rights & accessing help'

This video from The Patients Association, 'Knowing your rights, accessing help, and making the most of your healthcare appointment,' provides practical advice on how to better manage your experience in the healthcare system.

Professionals - join our network

Help us improve patient care and support for those affected by MDS & CMML by joining our professional network. Receive updates on patient experiences, access to treatments, quality of life, research funds, and our collaborations with MDS organizations worldwide. Membership is free. Find out more

MDS Patient Support
MDS Patient Support
MDS Patient Support

MDS UK Patient Support Group is a registered member of the ICO  (Registration no: ZB332063)

MDS UK Patient Support Group is a founding member of the MDS Alliance, the international umbrella group for all national support groups. The MDS Alliance is dedicated to sharing and improving information and awareness between patients, globally.

MDS UK Patient Support Group is a registered charity 1145214 (England and Wales) SC055405 (Scotland)

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