Myeloma Patients Europe AISBL

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 48 existing local and national myeloma associations and its members come from 31 different countries.

There are three types of members:

• Full members: non-profit patient organisations that are registered in a European country.
• Associate members: Any individual person who shares Myeloma Patients Europe’s goals and all other non-profit organisations that do not fulfil the criteria for full membership.
• Supporting members: Supporting members are individuals, foundations or corporations who have chosen to support the activities of the organisation through financial contributions or in-kind services. The type and amount of donation will be determined by the Board.

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
• Helping to 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 2019-2024 are to:

• Provide a strong voice for myeloma patients at a European and international level

MPE’s work relies on evidence-based advocacy. In order to represent and be recognised as a legitimate voice for the patient community, MPE must gather evidence about the needs and wants of patients to be able to represent them properly. This is not only the right thing to do but will also positively impact the perception of MPE among all key stakeholders.

• Strengthen members’ and individual advocates’ ability to advocate effectively

A skilled and well-prepared member organisation can advocate more effectively and efficiently at a national level, to overcome barriers and challenges. Also, the development of individual advocates at European and national level will help our community in achieving the desired impact.

• Secure a larger patient voice in myeloma research

In order to make sure myeloma research delivers to patients’ unmet needs from a clinical, care and quality of life perspective, MPE needs to empower the community and its individual advocates to become equal partners in research and regulatory affairs and to contribute to discussions and solutions in a meaningful way. To justify a seat at all relevant tables and to be able to provide meaningful, qualified and evidence-based input, MPE needs to continuously educate and prepare individual patient advocates in key knowledge areas. In parallel, MPE strives to collaborate with all key stakeholders as a respected partner, especially the areas of drug development and regulatory affairs.

MPE needs to stay in dialogue with all relevant stakeholders, to ensure the needs and wants of patients across Europe are taken into account during the entire drug development process, but also needs to closely monitor and push for the new treatments to reach the patient without unnecessary delays.

• Accelerate progress in the treatment and care of myeloma patients

MPE needs to stay in dialogue with all relevant stakeholders, to ensure the needs and wants of patients across Europe are taken into account during the entire drug development process, but also needs to closely monitor and push for the new treatments to reach the patient without unnecessary delays.

• Increase the number of patients who have their myeloma diagnosed in a timely manner

Late diagnosis is still a big problem in myeloma, with poor prognosis and important quality of life issues among the main consequences for patients. MPE needs to search for effective ways of addressing this issue at a European level but also help member organisations to address this at national level. It is key for MPE not to raise awareness generally but to strictly target any initiative to ensure a meaningful impact.

• Improve access to optimal treatment and care for all myeloma patients in Europe

Access to treatment and care is a challenge in most European countries. MPE needs to ensure it supports its members to advocate effectively and efficiently at national level, i.e. by generating and providing evidence to them, by coaching them, by helping them develop strategies to advocate. MPE will at the same time advocate and engage with stakeholders at European level whenever impact can be achieved at that level and taking into account the limited competencies in access issues that exist at European level.

• Strengthen MPE’s effectiveness, sustainability and capacity to take collective action

MPE needs to continue investing, not only in growth and impact, but in strengthening the organisation from the inside. This needs to be done with proper governance rules and their effective implementation, by gathering feedback from members and staff, by having a well-functioning Board, by diversifying and securing funding sources, among other means. Towards the outside, it is crucial that MPE continues working on a communications strategy (internal and external) and its implementation, to ensure the work done and impact achieved is also well communicated to the outside and understood by both the membership and key stakeholders. This will consolidate the reputation and credibility of MPE to the outside but also increase satisfaction of members, Board and staff.