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Full Time
Posted 3 weeks ago


EURORDIS is a unique, non-profit alliance of over 1000 rare disease patient organisations from 70 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting patients, families, and patient groups, as well as by bringing together all stakeholders and mobilising the rare diseases community, EURORDIS strengthens the patient voice and shapes research and policies.

With a strong network of patient organisations and a focus on advocacy, empowerment, and partnership, EURORDIS plays a crucial role in advancing rare diseases awareness, research, healthcare, integrated care, therapeutical development and access to treatment, data, and digital health across Europe and beyond. The AFM-Telethon has an important role as a co-founding member, as its main companion for independence and development, and its anchoring in France.

The Role

EURORDIS is seeking a dynamic and visionary leader to serve as its Chief Executive Officer (CEO). Under the supervision of the board of directors, the CEO will be responsible for providing strategic leadership, overseeing organisational operations, and driving the achievement of EURORDIS’ mission and goals decided in collaboration with the Board. This position offers a unique opportunity to make a significant impact on the lives of people living with rare diseases (PLWRD) and their families and shape the future of the organisation.


Strategic Leadership and Governance

  • Implement and maintain a long-term strategic vision and plan for EURORDIS, in alignment with its mission, strategic objectives and values.
  • Foresee and determine future horizontal topics crucial for the rare disease ecosystem in mid- and long-term perspectives.
  • Listen to, lead, and inspire a diverse team of professionals – staff & volunteers, fostering a culture of collaboration, innovation, agility, and network leverages.
  • Provide leadership, cultivate the leadership skills of others, and liaise with the Board of Directors, regarding matters of governance.
  • Maintain strong and regular relationships with the President and the Board at large.
  • In a people-driven and purpose-driven leadership, maintain strong and meaningful strategic partnerships, in particular with AFM-Telethon, national alliances and European federations.

External Relations and Advocacy

  • Set the course of priorities and co-shape the EURORDIS policies.
  • Represent EURORDIS externally, acting as the authoritative voice and advocate for people living with rare diseases and their families.
  • Collaborate with our networks as well as national and international stakeholders to shape policies and initiatives that address the unmet needs of the rare diseases community.
  • Initiate and maintain meaningful debate within a multi stakeholder environment. Actively engage with patient organisations, academic & healthcare partners, industry partners, policymakers, and other relevant entities, to advocate for the needs of people living with
    rare diseases.
  • Promote innovative approach and strategy to anticipate and address new topics (horizon scanning)
  • Strengthen EURORDIS’ position as a leading voice in the rare disease field through active participation in conferences, forums, and media engagements.

Organisational Management

  • Work closely with the senior management, the leadership teams and consult, as appropriate, with the President and Board of Directors.
  • Oversee all aspects of EURORDIS’ action plan, ensuring the efficient and effective use of resources to achieve organisational goals.
  • Perform in a multi project-oriented work environment (including annual/multi annual financial and organizational frameworks, deliverables, outcomes measures, reporting etc.).
  • Provide guidance and support to the management team, promoting a results-oriented approach and accountability in a collaborative way of working.
  • Promote a positive and inclusive work environment that encourages professional development, teamwork, employee, and volunteers’ satisfaction.

Resource Development and Financial Management

  • Ensure financial sustainability through effective budget development and management, financial planning, and diversification of revenue streams.
  • Establish, engage, and maintain strong relationships with main donors, sponsors, and funding organisations.
  • Ensure robust policies and practices to prevent potential competing interests.

Candidate Profile


  • In-depth experience of the rare diseases or chronic diseases landscape, including the challenges faced by patients and their families, regulatory frameworks, research advancements, and healthcare policies.
  • Experience within the community and ecosystem, as a “We” person, sharing a holistic perspective as rare diseases is about all aspects of life.
  • Strategy, vision, purpose, and value driven – ready to make a long-term commitment and energy investment in the position.
  • Proven experience in a senior leadership role, preferably at an international level, in a multilingual environment with a track record of successfully managing complex organisations and driving strategic initiatives.
  • Ability to manage an organisation and teams with different languages and spectrum.
  • Demonstrated ability to build and nurture relationships with diverse stakeholders, including patient organisations, industry partners, policymakers, and healthcare professionals.
  • Demonstrated good understanding of funding process and diversification of revenue streams to secure resources.
  • Experience and knowledge of NGOs as staff or volunteer is highly desirable.

Knowledge and Skills

  • Good understanding of the heterogenous nature of rare diseases, their wide range and complexities, as rare diseases represent the whole spectrum of medical issues and can lead to all types of disability
  • Excellent communication skills, both written and verbal, for Policy and Media, with the ability to effectively convey the EURORDIS mission and goals to a wide range of audiences.
  • Visionary and strategic mindset, with the ability to think creatively and drive innovation within the organisation. Strong in strategy planning and execution.
  • Strong organisational abilities, multitasking, prioritizing workload, and able to work under pressure.
  • Good knowledge of management principles, including the ability to inspire and motivate a team, to promote a collaborative decision-making process, and lead organisational change.
  • Ability to delegate, empower and support the team at all levels of the organisation, being a team player with an agile and problem-solving managerial style.
  • Excellent interpersonal skills, a “people” person to inspire, unify and guide both staff and volunteers, with a collaborative and “outcome oriented” management style.
  • Patient oriented, able to be a patient voice, to guide action with credibility, diplomacy, and boldness.
  • Ability to develop skills in European Public Affairs.
  • Firm and determined with strong negotiation skills, whilst remaining diplomatic and easy to work with.

Education and Mandatory Requirements

  • You are educated at university level, preferably with a master’s degree or PhD or equivalent and diversified European/International professional experiences.
  • You have at least 10 years of professional experience in a similar position. You have a good knowledge in health sector and international advocacy. You have experience in managing multidisciplinary teams.
  • You are willing and ready to travel across Europe on a regular basis.
  • You are fluent in English, and proficiency in other European languages is highly desirable. French is a plus, or your ability and willingness to learn it quickly.

Job Features

Job CategoryEducation, Health
LocationParis (possibly Brussels)
Salary95 000 € – 110 000 € per annum, according to experience
Contract TypePermanent, Full-time
Closing Date18th October 2023

Apply Online

How to Apply

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Job Features

Job CategoryEducation, Health
LocationParis (possibly Brussels)
Salary95 000 € – 110 000 € per annum, according to experience
Contract TypePermanent, Full-time
Closing Date18th October 2023

Apply Online

Martine Billanou

Associate Consultant - Europe