MDS UK PATIENT SUPPORT GROUP
This organization has already been registered
Someone in your organization has already registered and setup an account. Would you like to join their team?Profile owner : F*****e@m***************t.o*g.uk
Mission Statement
Support, information, awareness and campaigns for those affected by myelodysplastic syndromes.
About This Cause
MDS UK Patient Support Group is a charity born in 2008 to raise awareness of MDS, offer support and information to patients and families and campaign to increase the quality of life and make treatments available to those affected by Myelodysplastic Syndromes. We are the only charity in the UK solely dedicated to MDS. Most of our trustees and committee members are patients themselves or carers of patients. We work with all of the MDS experts in the UK and Ireland. We are the official MDS representatives at the UK MDS FORUM, the foremost group of experts in MDS, as well as at the NCRI clinical trial sub group on MDS. MDS is a rarer and very complex blood cancer. 2500 patients are diagnosed in the UK every year, but most people will never have heard of MDS prior to diagnosis. 85% of patients are aged over 60 years old and this disease has limited treatment options and a high mortality rate. Our membership is growing, but at a slow pace, in line with treatment improvements. We manage to reach about 20% of the diagnosed population. We have specialised in providing feedback and the PPI perspective on MDS clinical trials and projects, thanks to a range of MDS patient experts.