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About MPE

WHO ARE MYELOMA PATIENTS EUROPE?

Myeloma Patients Europe (MPE) is an umbrella organisation of myeloma patient groups and associations from across Europe. MPE was formed following the merger in 2011 of the European Myeloma Platform and Myeloma Euronet.

MPE is registered as a non-profit organisation (AISBL) under Belgian law and its headquarter is located in Brussels.

HOW IS MPE STRUCTURED AND WHO IS INVOLVED?

MPE acts as an umbrella organisation for existing local and national myeloma associations and its members come from nearly 30 different countries.

There are two types of members:

  • Full members such as patients’ groups or associations from European countries
  • Associate members such as non-European organisations, individual patients or healthcare professionals as well as corporations willing to make donations or to help in other ways

A Board is in place and has responsibility or agreeing strategy as well as for governance and accountability. The Board is multidisciplinary but is constituted to have at least 50% of its members as being myeloma patients or care-givers.

MPE’s Board members are all volunteers who are supported by the MPE staff as well as by an expert Medical Advisory Committee.

WHAT ARE THE AIMS AND OBJECTIVES OF MPE?

MPE has a number of broad aims including:

  • Collaborating on projects to the benefit of the myeloma community
  • Exchanging information and best practice
  • Developing existing patient groups and encouraging and facilitating the setting up of new groups
  • Helping to shape appropriate health-related policies and initiatives on a European and national level
  • Ensuring patients across Europe receive timely access to new treatment
  • Stimulating and promoting patient-centred research and clinical trials
  • Developing a strong evidence base for the needs and wants of patients and their role in research
  • Providing information, educational and outreach programmes to member groups

MPE’s strategic objectives 2013-2018 are to:

    • Build a professional and sustainable organisation

Patients, caregivers and sponsors deserve the best support through an effective and efficient organisation dependent on funding.

    • Facilitate development, capacity and sustainability of members

Provision of services to patients needs to be robust and sustainable. It must be capable of delivering quality and excellence in every respect. Also, given the number of patients involved, organisations need to have appropriate structures in place to deal with the work and to plan for succession.

    • Encourage research and the development of new effective treatment

Myeloma is a relapsing and remitting cancer with an evolving clone. It is also a very individual cancer. Patients therefore need constant access to more effective treatment with a tolerable side-effects profile.

    • Ensure the timely adoption of research outcomes or results and access to state of the art diagnostic tools and treatment

Research and clinical trials are time consuming processes. Also, approval and reimbursement systems can mean it can take many years before patients benefit from research results. Patients don’t have time for this and need to benefit sooner. Critical barriers and hurdles need to be removed and advance plans put in place for an early and timely response to research findings.

    • Encourage healthcare professionals to provide an excellent standard of care to patients and their families

Myeloma is not just about cancer, it is about the whole person and everybody connected to them  who is also impacted. Patients and therefore families deserve access to the best ‘holistic care’ possible, built not only around  their needs as cancer patients but also their personal preferences and circumstances.

    • Develop an evidence base for the needs and wants of patients and ensure access to high-quality information and psycho-social support

In order to advocate effectively for patient rights within government, industry and regulators we need solid evidence as to what the needs, wants and preferences of patients are. We need to move beyond the anecdotal, emotional and angry to an era of empirical evidence.

To meet its aims and in addition to its membership, MPE works directly with healthcare professionals, reimbursement authorities, regulators, politicians, pharmaceutical companies, the media and anyone involved in the ‘myeloma community’.

TO BECOME A MEMBER OF MPE

MPE is actively seeking members from across Europe, especially from countries and regions not currently represented.

There are two types of members:

  • Full members such as patients’ groups or associations from European countries
  • Associate members such as non-European organisations, individual patients or healthcare professionals as well as corporations willing to make donations or to help in other ways.

To become a member of MPE complete membership form here

If there is no association in your country or region, and you would like to set one up but need help, please get in touch.

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