Chief Executive Officer - European Haemophlia Consortium

European Haemophlia Consortium
  • Location
    Brussels, Belarus
  • Sector
    Non Profit
  • Experience
    Mid Career / Advanced
  • Apply by
  • Posted
    Jan 12

Position description

The European Haemophilia Consortium (EHC) is looking for its next CEO. The EHC was founded in 1989 for European advocacy and ‘watchdog’ purposes. The organisation underwent significant growth and restructuring from 2013 onwards to pivot the organisation from reactive to proactive, and from top-down to bottom-up. Ten years on, the EHC has become one of Europe’s most reputable and respected patient organisations, known for its professionalism, strong patient community engagement, bottom-up culture, strategic vision, and leadership in the field. Moving forward, the EHC is seeking to build on this foundation with a new five-year strategic plan and seeks a CEO that will understand and further build on this culture.

The ideal candidate would have proven strategic-, leadership-, people-, organisational-, and networking skills; be able to ensure a dynamic and effective oversight of the organisation in an efficient yet human-centric manner that is empowering of others (including staff and volunteers); integrate well into a small and close-knit community of rare disease patients and families; work collaboratively and cross-functionally in support of the organisation’s non-profit, patient-community-facing culture; be strategic and forward-thinking regarding the organisation’s future; and demonstrate a strong ethical, reliable, and trustworthy character able to ensure good organisational governance.

Time: Full-time

Duration: Initially one-year to start, renewable towards permanence after second year

Contract type: Employee or consultancy contract possible

Location: Brussels, Belgium (hybrid work possible, but Brussels presence required)

Reporting to: President

Start date: As soon as possible

Remuneration: Negotiable, and commensurate with experience


The CEO will be responsible for providing high-level strategic services to the EHC Steering Committee, staff, and volunteers. The CEO reports directly to the EHC President.

These services include, but are not limited to:

  • Actively contributing to the design, implementation, and regular review of the organisation’s vision.
  • Actively driving and contributing to the organisation’s strategic planning and evaluation processes.
  • Analysing the internal and external environment for changes and promoting key opportunities.
  • Communicating the organisation’s course and plans with internal and external stakeholders.
  • Externally representing the organisation at high level, together with the President or those designated by the President.
  • Overseeing the launch, funding, and execution of new initiatives.
  • Overseeing the Operations Director, their support of staff, and their work to ensure the long-term sustainability of the organisation.
  • Consistently seeking to ensure the relevance and quality of the organisation’s work.
  • Proposing and, where necessary, developing creative new ideas, projects, ventures, or other strategic partnership opportunities.
  • Working to keep the organisation dynamic and innovative.

To this end, the CEO shall:

  • Work closely with the President, the Steering Committee, and appointed EHC leaders.
  • Support the staff team through the Operations Director.
  • Plan, implement, and actively participate in SC and other leadership meetings (ex-officio).
  • Organise and lead annual retreats, including strategic planning retreats every four years.
  • Actively contribute to key areas of work across the range of EHC’s activities, including but not limited to European health policy, patient community-building, program development and delivery, conferences and meetings, and other content needs relevant to the field.
  • Participate in and actively contribute to other high-level leadership forums, as approved by the President.

This portfolio is subject to evolution and was last updated on in 2022.

Qualifications and requirements

  • Minimum 7 years of professional experience in organisational leadership role.
  • Strong English, fluency in French and/or Dutch, and other European languages, an asset.
  • Master’s degree in relevant field, e.g., public health, international relations, health economics
  • Demonstrated ability to build and maintain networks of stakeholders, run multi-stakeholder collaborations, and successfully fundraise.
  • Excellent attention to detail, organisational and project management skills.
  • Excellent people- and team management skills.
  • Strong interpersonal, networking, and diplomacy skills.
  • Able to demonstrate vision and leadership, while also maintaining flexibility, humility, and an ‘all-hands-on deck’ attitude within the team, when needed.
  • Willing to go ‘above and beyond’ for patient needs and best interests, when required.
  • Able to work under tight and occasionally shifting deadlines.
  • Able to work fruitfully and professionally with multiple cultures and professions, including patients, volunteers, doctors, external consultants, and service providers.
  • Able to work on weekends (for events), evenings (when necessary), and to travel (predominately in Europe) when needed.
  • Strong and compelling public speaker, chair, and facilitator an asset.
  • Familiarity or experience working in Brussels an asset.
  • Familiarity or experience with European institutions and/or the non-profit sector an asset.
  • Familiarity with haemophilia, rare bleeding disorders or other rare diseases a strong asset.

Application instructions

Applications should be submitted. The EHC will accept applications until February 12th. First interviews are planned for February 15th and 17th face-to-face in Brussels.

Applications should consist of ALL of the following:

  • Motivation letter, 
  • CV,
  • Expected range of desired gross remuneration,
  • Telephone and email contacts for 3 references (these may be contacted before a first interview).

Please note that incomplete applications will not be considered. 

We are grateful for all applications. Unfortunately, due to high volumes of work, only short-listed candidates will be contacted. We thank you in advance for your interest and look forward to hearing from you soon.

Please be sure to indicate that you saw this position on