About Us
MDS UK Patient Support Group is a charity started in 2008, to offer support and information to all those affected by Myelodysplastic Syndromes & CMML.
Our aims are
- to help patients understand the disease, by providing the latest information on treatments and therapies, and hosting speaker sessions
- to provide opportunities for MDS/CMML patients and their caregivers to connect and share experiences through regular support meetings and a members-only, dedicated facebook community
- to provide a voice for MDS/CMML in the wider blood cancer & rare cancer fields, ensuring MDS and CMML are on the agenda
- to campaign for MDS/CMML treatments offered elsewhere in the world to be available in the UK
- to support crucial research, facilitating PPIE (Patient and Public Involvement and Engagement) for clinical studies and trials.
"We have found the information provided by MDS UK, through its patient handbook, newsletter and website, to be invaluable"
Sue
How we support patients & carers affected by MDS & CMML
We offer
- A support line
You can Contact Us for help and support by telephone 9-5, Monday to Friday 020 7733 7558 - Information
We offer free Booklets & Factsheets, along with access to our website, where you’ll find the latest information on MDS & CMML, inspiring Real stories from those affected, and presentations from world renowned consultants and specialists in MDS & CMML - Support Meetings
Members can join our online Support meetings that offer a supportive space to share experiences, receive mutual support, and learn about the latest advancements in research and medicine. Some sessions are attended by leading haematology consultants and MDS/CMML specialists, with time for member questions at the end. - Members-Only closed Facebook Group: Members can connect with over 1,000 members for peer-to-peer support.
We offer free Membership to anyone affected by MDS/CMML (which is required for access to our meetings). It's quick, free and easy to join. Click the red button to sign up. For any questions, call 020 7733 7558.
“I have been feeling a bit ‘out at sea’ since my early August diagnosis of MDS. I have had my head in the sand in terms of understanding the illness and I have found discussing matters surrounding my diagnosis very frightening indeed. Thank you for being so generous with your time. I feel not only that I understand the illness a bit better, but that I am better equipped going into my next appointment with my consultant."
Mark
If you would like to support us
As well as the support we offer those affected by MDS/CMML, we liaise with leading clinicians and academics in the field who are seeking ways to improve outcomes for patients, but, due to the rare nature of the diseases, can find it difficult to attract necessary funds. Wherever we can, we aim to help plug the funding gaps for these essential projects, ensuring research into MDS and CMML doesn’t fall at the first hurdle.
If you feel able to support this pioneering work, by making a charitable donation, fundraising for us or leaving MDS UK a gift in your will, we promise that, by keeping our administrative costs to the minimum, the maximum amount of every pound raised goes directly into supporting patients and helping MDS-focused research to continue.
Please consider donating either a single amount or a small monthly donation by clicking the button below.
Our contact details
Telephone: 020 7733 7558
Email: info@mdspatientsupport.org.uk
Address:
Unit B12
The Fuel Tank
8-12 Creekside,
London
SE8 3DX
Charity Commission details: Registered Charity no. 1145214
For more contacts see Contact Us.
Or if you need support see Contact us for support
