Campaigns

We campaign on behalf of those affected by MDS

In collaboration with professional advisers covering healthcare, the media and Government we campaign to ensure the best possible resources are available to all people affected by MDS, wherever they are in the UK and whatever their circumstances.

MDS UK Latest Campaigns

Blood Cancer: The Forgotten Fifth
Blood Cancer: The Forgotten Fifth
Blood Cancer and MDS, the forgotten cancers Blood cancer patients are less likely to see their needs fully met than...
Deferasirox (Exjade) access in MDS – Myelodysplastic Syndromes Overview of a UK wide postcode lottery – 2015 to 2021
Deferasirox (Exjade) access in MDS – Myelodysplastic Syndromes Overview of a UK wide postcode lottery – 2015 to 2021
Deferasirox is only licensed second line for the treatment of chronic iron overload despite real-world experience showing that deferasirox is...
Ask your MP to do more to support blood cancer patients
Ask your MP to do more to support blood cancer patients
COVID-19: Requests to the government on behalf of the blood cancer community The UK’s blood cancer patient community are clinically...
What needs to be done for rare and less common cancers? Join our Do you C us campaign!
What needs to be done for rare and less common cancers? Join our Do you C us campaign!
Rare and less common cancers account for nearly half of new cancer diagnoses They affect people of all ages, genders,...
2nd Stem Cell Transplants Funding Re-instated Thanks to Your Support!
2nd Stem Cell Transplants Funding Re-instated Thanks to Your Support!
NHS England will fund 2nd stem cell transplants for patients whose blood cancer relapses Since NHS England initially announced in...




MDS UK has been involved in providing input to the National Institute for Health and Clinical Excellence (NICE) and has representatives who belong to Patients Involved in NICE (PIN). We also campaign in collaboration with other organisations such as Cancer52, representing the less common cancers, and the Blood Cancer Alliance.

We have regular dialogue with MPs and peers, particularly those with appointments in health or a strong interest in healthcare matters, to keep them informed about MDS and its treatment.

MP Rarer Cancers Toolkit

Your constituent, their treatment and how you can help. Updated July 2012

The Parliamentary Lobby Day on 26th October 2010 was extremely successful. Numerous patients were able to speak to their MP’s personally and discuss the issues surrounding MDS, access to treatment, NICE time-lines and the Cancer Drug Fund.
MDS UK also released the results of a survey that found that 2/3 of MPs didn't know what NICE HTA or a QALY was.
Watch the discussion on Parliamentary TV or read the main points here

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