We are the only group dedicated solely to MDS in the UK.
“Support, Information, Awareness and Campaigns for those affected by Myelodysplastic Syndromes”.
The majority of our committee members are either MDS patients themselves or relatives of a patient.
We were formally set up in 2008 and have two full-time employees as well as a part-time volunteer.
We are funded by donations, fundraisers and pharmaceutical grants.
We are delighted to cooperate with other MDS groups anywhere in the world – and look forward to meeting any new members to share best practices.
Our aims are:
- To provide a networking service through which those newly diagnosed with MDS can share their experience with fellow sufferers.
- To provide a help and advice telephone line 5 days a week.
- To organise several national patient information meetings with specialist speakers.
- To help patients create small regional support group meetings, to meet informally – or organise activities or small presentations.
- To distribute information and raise awareness of MDS among patients, carers and health care professionals across the UK.
- To provide access to a list of UK consultants, specialising in MDS.
- To develop and maintain a website, providing information on MDS, latest news or research and clinical trials and a very active Patients Forum.
- To run two Facebook pages (one public, one per invitation only) and a Twitter account.
- To fund a research activity in MDS, that will benefit patients