We are able to run the MDS UK Patient Support Group thanks to donations from individuals and businesses, fundraising events and grants from pharmaceutical companies – as well as memorial donations from families who sadly lost a loved one to MDS.
MDS UK does not currently receive any other types of grants or assistance from Government or Trusts.
We need funds to offer patients these services free of charge:
We want to ensure that all patients and families receive the attention and information they need during those particularly difficult times – straight after diagnosis, at treatment changes, time of transplant or progression of the condition.
As of 2018/2019, thanks to the donations and legacies received to date, MDS UK will be in a position to fund aspects of research in MDS – in addition to the essential support services we have been providing to patients and families since 2009.
As part of our recently revised funding strategy, MDS UK intends to commission and participate in research projects relating to MDS, as well as initiate, support and participate in research which is likely to assist in the understanding and treatment of MDS.
More information related to the exact projects and precise nature of the research areas will be shared on this page – as soon as possible.
Fundraising efforts will of course be maintained to support all of our traditional Aims and Objectives – which are Support, Information, Awareness & Campaigns for those affected by MDS.
Campaigns and advocacy are of particular importance when it comes to ensuring that a drug is “approved” or recommended for use in the NHS (the cost effectiveness process)
Without the patient voice and support group contributions (which require a lot of time preparing and attending meetings), some drugs would either not be recommended, or take a lot longer to be recommended.
We will also be providing a list of advocacy achievements in this particular area shortly.
Thank you for all your efforts, support, encouragement and confidence in all we do, for and with patients and their families.
We have some wonderful people, patients, families and companies who raise funds in many different, amazing, simple or courageous ways.
We are utterly grateful to all of you who are helping the cause of MDS
Raising funds = Raising awareness of MDS
Please help by talking about MDS and MDS UK amongst friends, families, colleagues - every type of contribution helps.
Other ways to give: Bank Card or Pay Pal
Shop and Give without even noticing it: Give as you Live
Give as you Live is a free and very easy way to raise money for us – without having to donate anything yourself – simply by shopping online via this website.
If you use the internet to buy goods, hotels, travel or services online, please consider using this scheme, which allows you to pick your favourite cause and raise funds at no cost to you!
Sign up, and browse the Give as you Live website for the store you want to shop with. Click 'shop now' to go to their website, then continue to shop as normal.
Give as you Live will then email you within 1-7 days to let you know how much you've raised for us.
MDS UK is registered on Give as you Live. All you need to do is to register and then shop online as you would normally do.
Please forward to friends and family. Thank you for your on-going support.
MDS UK is a young organisation, formally set-up in 2009
We want to sustain this level of assistance to patients in the future and also make sure we achieve continuous financial stability for the group.
Our aim in the long-term is to increase our fundraising for Quality of Life research projects, Clinical Nurse Specialist posts or projects, Counselor posts. We are also connected to the UK MDS Forum, led by Prof Mufti and aim to assist this group with funding as soon as we are able.
We need funds to cover the running costs of the organisation, namely, 2 employees, funding of travel costs to conferences and meetings, where we represent the needs of UK MDS patients, and general running costs of an office (computers, printers, stationary, telephone, internet). Fortunately, our office space is free of charge. We are grateful to our Patron Prof Mufti at KCH to let us have use of those offices for MDS UK work.
We do keep costs as low as possible. We have 10 further members on our committee – all working on a voluntary basis – most of them patients themselves. We also have one volunteer assisting with admin work 1 day/week. But we desperately need funds now and in the future to keep going in the long-term.