Apply to review Cancer Research UK research centres

Cancer Research UK are recruiting a patient panel to review their research centres and you can apply to be a member. Cancer Research UK funds 18 experimental cancer medicine centres and gives support to 15 more research centres across the UK. These centres are essential to beating cancer sooner. All of these centres will apply […]

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Understanding Mutations to Treat MDS

The most dramatic development in MDS research over the past few years has been the identification of the gene mutations that cause MDS. These mutations are not inherited, but are acquired in blood stem cells during the lifespan of a person. Benjamin Ebert is researching these mutations. A major focus of his research is to […]

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Take Part In This Survey And Help To Create Better Tools For Patients

Thanks to the latest improvements in cancer treatment many more cancer patients are now able to live with their condition. As a chronic illness, cancer requires long-term watch, maintenance and treatment and patients and their families need to manage their own care. The iManageCancer project is creating intelligent, fun new ways to allow patients to […]

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Evie McClean Starts an Exciting New YouTube Channel

Evie does You Tube – and she is a real pro!!! Go Evie! Have a look at her first video clip. Evie is a member of the MDS UK Patient Support Group. Here is Evie’s video clip with 10 facts about her. We hope she will do a great clip for MDS UK to talk about […]

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Urgent – CDF solution for Blood Cancer drugs

The Cancer Drug Fund (CDF) de-listing further drugs Many blood cancer patients are about to face more severe issues of access to treatment, following the announcement that the CDF is de-listing further drugs in order to balance its budget. Twelve of these are blood cancer drugs. None of the cuts affect MDS patients, but the […]

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MDS World Awareness Day – 25th of October 2015

2015 MDS World Awareness Day: Video Stories 25/10/2015 Some of our true champions for MDS awareness have shared their stories with us. Watch their video clips and share them in support of MDS World Awareness Day 2015! Emma Paine: What happens when you need a second transplant? Emma is an MDS patient.  She had a […]

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Question Prompt List to help meet the information needs of MDS patients

What do UK MDS patients say about the information they receive at diagnosis? According to UK MDS Survey: Over half of respondents agree that their needs for verbal information on MDS have been met sufficiently. For the remaining 46% the provision of verbal information could be improved on. Usefulness ratings of verbal information provided vary […]

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100 Q&A book on MDS – revised edition

100 Q&A book on MDS – revised edition We now have a brand new revised edition of the really helpful 100 Questions & Answers book on MDS available from our office – free of charge to patients. Some of you may have been given the initial 2008 edition, which we distributed a few years ago […]

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Survey in Europe – Measuring Quality of Life

London School of Economics Survey about how quality of life is measured and reported in Health Technology Assessments (HTA) 28/05/15 Another survey for patients and carers to take part. HTA organisations, such as for example NICE (National Institute for Clinical Health and Excellence) mostly use a questionnaire called the EQ-5D to measure the impact of […]

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TV programme on rare diseases

Tigress Productions looking for volunteers for programme on rare diseases – 28/05/15 We have been contacted by a TV production company – Tigress Productions – who are looking for patients with a rare disorder – and had problems getting diagnosed. MDS would be ideally suited for this, as many patients often take a while to […]

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