MPN Advocates Network (MPNAN), a global collective of Myeloproliferative Neoplasms (MPN) Patient Advocacy Groups, is seeking a part-time Executive Director

January 2020

About the MPN Advocates Network (MPNAN)

MPNAN was originally founded in 2013 by representatives of MPN patient groups from around the globe. The vision was a world in which the patient advocacy groups helping those with Myeloproliferative Neoplasms (MPN) would be connected to one another and the most up to date information about how to manage a PAG successfully. MPNAN’s mission is to enhance the ability of patient advocacy organizations to improve patient care and quality of life globally for those who have been diagnosed with an MPN. MPNAN is constituted as an independent steering committee within a parent organisation, the Leukaemia Patient Advocates Foundation (LePaf), registered as a non-profit organisation in Switzerland. MPNAN operates for the benefit of Myeloproliferative neoplasms (MPN) patients and acts independently of any other organization or company.

About MPNs

MPNs are a group of chronic, progressive blood cancers. MPNAN is hiring its first executive director who will lead the organization through its next stage of evolution. With a proven track record of 5 years of successfully bringing the global MPN patient advocacy world together, the MPNAN wants to enhance and grow its offerings to members and increase its impact on the global patient advocate community. The ED will inherit a passionate and active steering committee who has begun the drafting of a strategic plan, and who is eager to work with the ED on refinement and, most importantly, execution. The position is currently envisioned and funded for part-time but has the potential to grow.

About the role

The Executive Director is a newly created role for MPNAN. This is a part-time position that will provide operational capacity to MPNAN. The Executive Director will work closely with the Steering Committee especially in this stage in their development. The Executive Director will be responsible for the overall management, implementation of programmes and projects, administration and strategic plan of the organization. They will work with the Steering Committee to determine appropriate goals and timelines for deliverables for these projects. This is a fantastic opportunity for someone who wants to make a difference and work closely with an evolving organization to improve the outcomes for people living with rare diseases in a global context.

Other key duties include working with the Steering Committee on financial planning, fundraising, communications, membership management and outreach to the wider community and other stakeholders. The position will report directly to the MPNMPN Advocates Network Steering Committee, specifically its chair and treasurer. The Executive Director will be working from their home office. Appropriate accommodations to ensure efficient communication between the ED and Steering Committee will be provided in addition to the compensation package offered for this position.

General responsibilities


  • Attending monthly Steering Committee meetings and others as needed.
  • Responsible for executing the mission and objectives of the MPNMPN Advocates Network, supporting and guiding the organization’s mission, strategy and priorities, as defined by the MPNMPN Advocates Network Steering Committee.
  • Responsible for communicating effectively with the Steering Committee and providing, in a timely and accurate manner, all information necessary for the Steering Committee to function properly and to make informed decisions.
  • Responsible for providing sufficient support for the Board to ensure good governance of the organisation.
  • Work with MPNAN Steering Committee to ensure goals are in line with organization mission and within the operational capacity of the organization.

 Financial Performance and Viability

  • Responsibility for the fiscal integrity of MPNAN to include submission to the Steering Committee of a proposed annual budget and quarterly financial statements, which accurately reflect the financial condition of the network.
  • Responsible for budget planning and financial management, ensuring that all projects and activities operate within the approved budget. Ensures maximum resource utilization and maintenance of the organization in a positive financial position.
  • Responsible for fundraising and developing other resources necessary to support the MPNMPN Advocates Network’s mission and to accomplish significant program goals.
  • Ensures the legal and fiscal requirements expected from MPNAN by the parent organization Le Paf, a Swiss foundation, are being met.
  • Responsible for the hiring, supervision, retention and performance management of competent, qualified staff, vendors and consultants, as needed and in respect to the annual budget approved by the MPNAN Steering Committee
  • Responsible for signing all notes, agreements and other instruments made and entered into and on behalf of the organization.
  • Responsible for keeping the Treasurer informed about the finances of the organization

Program Execution

  • Execute MPNAN priority projects.
  • Provide a periodic assessment of their success and plan for refinement. Be prepared to offer suggestions for any changes to existing or possible programs.
  • Work with MPNAN Steering Committee to liaise with the network’s member organisations and their leaders to maintain and grow the global network and solicit their input for programs.

Organization Communications: Runs and develops internal and external communication strategy of the MPN Advocates Network.

  • Maintain and/or increase the engagement of MPN Advocates Network members, volunteers and other patient advocacy groups.
  • Work with Membership committee to define the value to PAGs of membership in the Network and ensure that is communicated to current and prospective members
  • Responsible for liaising with members, responding to their requests and needs.
  • Create and execute a strategic communications plan

Other Job Responsibilities

  • Delegate to, monitor progress for and collaborate with MPN Advocates Network Steering committee, subcommittees, member organizations, and volunteers.
  • Establish and maintain relationships with various stakeholders and their organizations and utilize those relationships to strategically enhance the MPN Advocates Network’s Mission and drive outreach and impact of its initiatives.
  • Organization of the Board and Steering Committee meetings.
  • Review and approve contracts with service providers, contractors, funders and partners.
  • Other duties as assigned by the Steering Committee.

Required qualifications and experience

  • A university degree or equivalent education and experience, preferably but not necessarily in Law, Political Sciences, Public Health, Nonprofit Management, Business Management or another related/relevant field.
  • At least 3 years’ experience in policy and/or patient advocacy work at European and/or international level.
  • Experience of working in the NGO sector.
  • Experience in leading employed and/or volunteer teams.
  • Track record in managing successful projects.
  • Capacity to undertake strategic plans and their implementation.
  • Knowledge of healthcare in general and in particular in areas as access to health policy, patient advocacy, NGO communications, programme management and development, and financial management.
  • Proven experience in writing reports and briefing documents.
  • Excellent communication and presentation skills.
  • IT literacy, including online collaboration tools for virtual teams.

Required qualities and attributes

  • Capacity to work independently with minimal supervision.
  • Excellent English (written and verbal).
  • Capacity to manage a complex workload, to plan and prioritise effectively, with flexibility and ability to multi-task.
  • Capacity to run a business remotely, with key contributors also offsite.
  • Desire to work with a diverse stakeholder community, and a willingness to do so with sensitivity, integrity, and empathy.
  • Willingness to travel.
  • Willingness to work unsociable hours with reasonable notice.
  • Ability to be politically impartial in the application of duties.

Desirable qualities and attributes

  • Familiarity with hematological diseases, especially Myeloproliferative neoplasms, or willingness and eagerness to learn.
  • Knowledge of health policy, human and/or patients’ rights.
  • Understanding and awareness of clinical research.
  • Working knowledge of other languages.

What this opportunity offers the right individual:

The chance to lead a global cooperative network through an exciting phase of their evolution and work with passionate, talented, professional leaders of patient advocate groups globally.

A flexible work schedule where you can help advance the goals of a patient advocacy group on a part-time basis. We offer a competitive salary depending on experience.

To apply, please send  an email to with the subject: “Application Executive Director” including:

  • One-page cover letter in English, highlighting the motivation and skills which are relevant for this part-time position
  • An up-to-date CV in English
  • Two references in English


The MPN Advocates Network will process the data submitted by candidates just for the purposes of recruitment and selection with a strict privacy and confidentiality policy. We will treat your data with the utmost care and take all appropriate steps to protect it.