MDS UK Patient Support Group

MDS UK Patient Support Group

Charity information

MDS UK Patient Support Group

Support for those affected by Myelodysplastic Syndrome, ("MDS"), which is a rare blood cancer. We provide: national helpline, national & regional meetings with specialist speakers, a website & newsletter, campaigning for access to treatment, a networking service for MDS patients to share experiences & support; we cooperate with all UK MDS clinical experts & aim to connect with all UK haematology departments. In addition we collaborate on research projects connected to Quality of Life topics.

Founded 2011

  • Mission statement

    Support, Information, Awareness & Campaigns for those affected by MDS

  • Aims

    MDS UK Patient Support Group aims to:

    • Ensure all MDS patients have access to high quality information about the disease.
    • Ensure all patients are offered the right treatment at the right time in order to maintain the best quality of life.
    • Ensure all patients are referred to MDS Centres of excellence or MDS specialist centres in a timely manner.
    • Ensure that all MDS patients and relatives have the opportunity to seek emotional and practical support via our helpline, group meetings or peer to peer connections.
    • Raise awareness and a good understanding of the blood cancer MDS amongst general public, politicians and health authorities, to improve the patient journey.
  • Overview

    Established: October 2011

    Registered Charity Number: 1145214

    Board members: 9

    Full time staff: 2

    Part time staff: 1

    Volunteers: 10

    Phone number: 02077337558

    Address: King's College Hospital, Haematology, Bessemer Wing se5 9rs

    View charity accounts on the Charity Commission website