My Journey with MDS

MDS - Why we need funds

01/04/2015 22:19

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.

These funds enable us to offer the following services free of charge to patients:

  • National and local meetings for patients and families; a 1 day national meeting in a hotel costs about £5,000 for 100 attendees – covering preparation, room rental, catering, information material, audio-visual set-up.
  • 2 newsletters per year, leaflets, information material – we send out about 15-20 information packs a month.
  • A telephone helpline, manned 5 days a week – we get about 10 calls a week from patients and family members.
  • Our website, online discussion forum, Facebook page – constantly updated
  • A national survey project Assessing the needs of UK MDS patients amongst 450 MDS patients – which will help highlight many issues to authorities and media

MDS UK is still a relatively 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 for the long-term future 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:

  • 2 employees
  • Funding of travel costs to conferences and meetings in theUKand some inEurope- where we represent the needs of UK MDS patients
  • 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 have 10 further members on our committee – all working on a voluntary basis – most of them patients themselves.
We have one volunteer assisting with admin work 1 day/week.
We do keep costs as low as possible.
But we desperately need funds now and in the future to keep going in the long-term.


The number of patients affected by MDS is increasing all the time – due to better GP awareness – and the ageing population.
We want to ensure that all patients and families will 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. #MDS


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