Other emerging local groups

Yorkshire/Leeds area: several patients interested in meeting regularly.  Meeting place required is being organised. Cardiff/Bristol/Weston-Super-Mare area: we need more patient interest to establish a regular local group. As well as a meeting place. Midlands: strong interest from many patients – not been able to hold a forum in the area in 2012 – due 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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EHA SWG “Symptoms and Quality of Life” Survey – please take part!

FOR THE ATTENTION OF MDS PATIENTS Please find below information about the new and exciting research project in quality of life of people suffering from haematological malignancies. Please help ensure MDS patients are sufficiently represented and take part as soon as possible, the results are needed very soon!   “The European Haematology Association Scientific Working Group […]

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New Deputy Chairman at MDS UK

MDS UK has a new deputy chairman – 21/05/15 We are very happy to announce the election of Russell Cook as a new Deputy Chairman for MDS UK. Russell has been a Committee Member since 2014, then Trustee and Director since early 2015. Russell had a life-saving stem cell transplant 3 years ago, to treat […]

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