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 the UK and some in Europe- 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.
Memorial donations and legacies
We also have many families who sadly lost a loved one to MDS and kindly contribute to a memorial fund in their name.
Please contact us know if you wish to help in this way – or wish to set up a legacy.
We have a brief MDS info sheet available Download here
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.
Don't forget - you can donate in many ways:
your time, expertise, services, goods, venues, gifts to auction, presents for raffles....
Registered Charity No: 1145214