We’d like your help shaping our new website
26 Aug. 2026We’re creating a new website for MDS UK, and we’d love people affected by MDS, including patients, families and carers, to be part of it. We want the new site to reflect the real experiences of people affected by MDS and to provide the information, support and reassurance they need at every stage.
Why a new website?
Our current website has served the MDS community for more than 14 years and has been an important part of how we’ve shared information and supported people affected by MDS.
While it has served us well, the technology behind it is now outdated and can no longer support everything we need the website to do. Replacing it has become a necessity, but it also gives us an opportunity to create a more accessible website that makes it easier for people to find the information and support they need.
How you could help
Alongside trusted medical information and specialist knowledge, we want to include the voices and experiences of people affected by MDS.
There are things you only really know from living with MDS yourself, caring for someone who has MDS, or supporting a loved one through diagnosis and treatment. Your experience could help someone else feel less alone, better informed and more prepared for what lies ahead.
We’re particularly interested in hearing about:
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What it was like receiving an MDS diagnosis.
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Living with MDS, including active monitoring (“watch and wait”) and day-to-day life.
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Your experience of treatment and how it affected you and those close to you.
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Caring for or supporting someone with MDS.
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What helped you cope, including information, services or support you found valuable.
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Things you wish you’d known earlier, or would like to share with someone newly diagnosed.
You don’t need to share your whole story. A few sentences, a short reflection or a piece of advice can be just as valuable as a longer account.
You don't need to be a writer
We’ll make it as easy as we can to take part.
If you’re not sure what to write, we can provide prompts and questions to help you get started. If you’d prefer to talk rather than write, we’d be happy to arrange a conversation and help turn your experiences into content for the site.
You can share as much or as little as you’re comfortable with. Photographs are completely optional, and you can contribute anonymously if you prefer.
No commitment at this stage
At this stage, we’re simply looking to hear from people who may be interested in helping. Registering your interest doesn’t commit you to anything.
As the project develops, we’ll get in touch with more information about the different ways you could contribute. You can then decide whether you’d like to take part and what feels right for you.
Interested in helping?
What you share could make a real difference to someone affected by MDS. If you’d like to help, use the red button below to let us know. It only takes a moment to fill in the form.
