EURORDIS - Chief Executive Officer

Executive Officer

Chief

About EURORDIS - Rare DiseaSes Europe

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.

About rare diseases

The European Union considers a disease as rare when it affects less than 1 in 2,000 citizens. Over 6,000 different rare diseases have been identified to date affecting an estimated 30 million people in Europe and 300 million worldwide. 72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. 70% of those genetic rare diseases start in childhood.

Due to the low prevalence of each disease, medical expertise is rare, knowledge is scarce, care offerings inadequate and research limited. Despite their great overall number, rare disease patients are the orphans of health systems, often denied diagnosis, treatment and the benefits of research.

Hear what Yann le Cam, retiring CEO of EURORDIS, says about his job:

“This job is a mission and a unique one: to serve 30 million people living with a rare disease as well as to inspire, lead and deliver to a very diverse community of highly committed actors.

I feel privileged to serve such a wide pan-European community of highly committed and extremely competent actors, who bring a unique collaborative mindset.

I believe that, over the next ten years, 100 million years of life of persons living with a rare disease can be saved in Europe. Do you know other jobs that give such an opportunity to make a difference?”

Letter from the President

Dear Candidate, EURORDIS is an organisation that exemplifies community. We are a community in every sense of the word, and each person within it is vital to achieving our goal of leaving no one living with a rare disease in Europe behind. We are an inclusive organisation with a mutually supportive and engaged governance board, staff, and volunteers, representing different diseases, cultures, and languages. Diversity is key to our strength and success, with the varied perspectives of our members and stakeholders incorporated into all aspects of our work, resulting in truly meaningful outputs that have and will continue to drive policies that change lives.

We are looking for a Chief Executive Officer who can build on a rich legacy, is energised by people, and is committed to working with a highly networked community to improve people’s lives. We seek someone who understands what it means to live with a rare disease – a “we” person.

We need a leader who is also a listener, creative, and curious, capable of working with all stakeholders and finding effective ways to collaborate in a dynamic and unique environment.

If you are considering a change and are interested in leading a peopleoriented organisation representing the voice of 30,000,000 people living with a rare disease, where every day is different and opportunities abound to lead positive change, we would like to hear from you.

Many thanks for your interest!

Avril Daly, President EURORDIS - Rare Diseases Europe

Position Chief Executive Officer (CEO)

Responsible to President of the Board of Directors

Contract Duration Permanent, full-time

Salary 95 000 € – 110 000 € per annum, according to experience

Location Paris (possibly Brussels)

The Role Job Description

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.

Responsibilities

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

Experience

• 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.

Candidate prOFILE

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.

wHAT WE OFFER

• A unique opportunity to join one of the most prominent and wellrespected European NGOs with international outreach.

• To lead and shape a purpose and value-driven organisation operating in a fast-changing policy environment and a thriving ecosystem.

• To manage and inspire a team of passionate and talented people, motivated to improve the lives of people living with rare diseases.

• A position to be based at EURORDIS Paris HQ office (possibly at our Brussels office).

• A permanent contract to start in April 2024.

• A gross annual salary between 95k € and 110k € over 13 months, depending on experience.

• A comprehensive package of days off per year, health insurance, meal vouchers, etc. to be detailed during the interview

hOW TO APPLY

All correspondence, at this stage, should be via Oxford HR. To apply for this post, click on the “Apply” button on the job advert page, complete our online application form, and submit your CV and cover letter as two different documents, which should be prepared before applying as they will be considered in the application process. The CV should outline your career history, relevant competencies, and key achievements. The cover letter should be no more than two pages long and articulate your motivation, personal fit and vision for leading EURORDIS.

The document should be saved in PDF in the following format: Your First Name-Your Last

Name-Document Name-Date (mmyy) e.g., Pat-Jones-CV-092023-EURORDIS or Pat-JonesCoverLetter-092023-EURORDIS.

Timeline

Closing of Applications: 18th October, 17h CET

1st Interviews with Oxford HR: 26th October to 2nd November

EURORDIS Panel Interviews: 13th and 14th of November (TBC)

Final Board Interview (face-to-face in Barcelona): 23rd November

Selection Process

All candidates will receive an update regarding their application after the closing date. We advise candidates to add the role email to their safe senders list and regularly check their spam folder.

Equality Statement

Equality and diversity are at the core of EURORDIS’ values. Staff are expected to work collectively and individually to promote a constructive and sensitive approach to others from a variety of backgrounds, where the work of others is valued and respected.

Queries

If you have any queries on any aspect of the appointment process, need additional information, or would like to have an informal discussion, please email at eurordis@oxfordhr. com in the first instance.

About Oxford HR

Exceptional leaders can inspire change and propel purposeled organisations towards reaching their world-changing goals. Finding such leaders can be a challenge; and yet their transition into leadership is vital to an organisations mission and success.

Oxford HR is a global leadership consultancy dedicated to searching for and supporting remarkable leaders and teams in purpose-led organisations.

We understand the nuances of purpose-led leadership because we’ve worked in organisations across the breadth of the sector ourselves. We’ve also worked with such organisations since 1995; so we appreciate just what benefits impactful people can bring.