MDS UK Patient Support Group 

Welcome to MDS UK. If you’re affected by Myelodysplastic Syndromes, you’re not alone.
As a charity, we're here to help you navigate diagnosis, treatment and beyond. We offer trusted information, online support meetings with MDS specialists, one-to-one help, and a community of people who understand.
Scroll down or browse the menus to find how we can support you.
MDS Patient Support

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 

It's easy to get overwhelmed by some of the complex information given at your appointments. Use this pre-prepared list of questions to help you get the answers you need.

 

Coping with a diagnosis of MDS

Watch senior psychotherapist Surabhi Chaturvedi’s video on the emotional impact of MDS. She explores adjustment, myths, uncertainty, peer support, and strategies for coping and living 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.

Membership is free — join MDS UK to access online meetings.

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.

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

Thinking of fundraising for us?

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

Fundraise your way for MDS UK!

From bake sales to quiz nights, every event makes a difference. Use our Step-by-Step Guide and free Fundraising Toolkit to plan your fundraiser.

Great North Run 2026 – Want to run for MDS UK?

On 13th September 2026, the Great North Run is back — and we’d love you on our team. Register your interest today (no commitment yet!) to secure a charity place.

 

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 UK Patient Support Group logo
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 (Registered charity No: 1145214)

MDS UK Patient Support Group is a registered charity (Registered charity No: 1145214)