Position description
EURORDIS is a unique, non-profit alliance of over 1000 rare disease patient organisations from 74 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 disease community, EURORDIS strengthens the patient voice and shapes research and policies.
EURORDIS’ vision is a world where all people living with a rare disease can have longer and better lives and can achieve their full potential, in a society that values their well-being and leaves no one behind.
About the Role and Responsibilities
As part of the Advocacy Team, and relying on the extensive expertise existing in the team of EURORDIS, the new team member will:
- Enable EURORDIS to maintain and increase EURORDIS influence on policies and initiatives related to patient access to treatments on behalf of PLWRDs (people living with rare diseases in Europe) with a focus on:
- Addressing existing delays and inequalities across Europe, underlying challenges in the field of the value assessment and pricing and reimbursement of therapies, and other current efforts/initiatives towards improved patient access;
- Promoting a stronger cooperation between EU Member States in the field of access - ranging from horizon scanning and value assessment, all the way to price negotiations and payment models (see “Breaking the Access Deadlock” and "Rare2030 Foresight Study” for reference).
- Empower EURORDIS to stay firmly abreast of major European access policy developments and initiatives of relevance for PLWRDs, but also to be able to shape access policy in the years to come;
- In close coordination with the CEO, the Head of Advocacy, the rest of the team and relevant internal groups and committees, support the definition and the implementation of EURORDIS access strategies, with the following specific objectives:
- playing a leading role in identifying access policy developments and initiatives, leveraging in house expertise;
- assessing opportunities and threats related to access to treatments;
- provide strategic advice on access schemes and policy initiatives;
- establishing and maintaining relations with relevant contacts and partners within European institutions,
- implementing advocacy campaigns and policy actions.
- Lead the internal conversation with the team to define and update EURORDIS’ position in the field. As a particular example, the new Senior Advisor will focus on “Breaking the Access Deadlock” review in light of developments in health policy in Europe, ensuring the internal consultation processes with team members and membership, as appropriate.
External Representation and Engagement with Industry
The new Senior Advisor will also:
- Represent EURORDIS and is a key voice of PLWRDs externally in conversations relating to access policy and initiatives, in access policy platforms, think tanks, working groups, consortia etc. of strategic importance for EURORDIS and its members;
- In particular, acts as lead or advisor and support alongside other relevant colleagues in:
- WHO Novel Medicines Platform;
- RD Moonshoot;
- OD Expert Group;
- EFPIA and EuropaBio Patient Think Tanks;
- NCAPR (National Competent Authorities for Price and Reimbursement).
- Establish, maintain and strengthen relations with health sector companies, including establishing and maintaining working relationships with other major organisations e.g. sectoral bodies (EFPIA, EUCOPE, EuropaBio etc.);
- Support the Corporate Relations Director and team, in the engagement and relationship building with health sector companies;
- Provide input in bilateral meetings (i.e. calls and face to face) between EURORDIS and industry on issues of mutual interest, including contributing a public affairs perspective on EURORDIS’ position on policy initiatives and developments that are relevant to both;
- Make recommendations in the strategic selection of topics for biannual ERTC workshops and in the development of the programme, along with other internal topic leads;
- Make recommendations on involving industry in new engagement opportunities to advance EURORDIS priority areas.
About the Qualifications
- Background in law, public policy, political science, pharmaceutical or economics with any other relevantdegreeto be considered;
- Familiarity with the field of rare diseases, pharmaceutical legislation, and orphan medicines, with the issues at the core of the work of EURORDIS, and with the objectives of EURORDIS in general;
- A minimum of 5-6 years of relevant experience in the field of public affairs and advocacy - a previous role in a European institution, a government body or an organisation active in the field of public health will be a plus;
- Fluency in written and spoken English absolute must - proficiency in other European languages will be a plus;
- Robust understanding of the current major drivers of the public health policy debate in Europe, particularly issues related to access to medicines and sustainability of national healthcare systems;
- Autonomy, flexibility, and ability to take initiatives and exert good judgment with minimal supervision;
- Dynamic personality with a natural ability to engage with stakeholders, nourish and develop professional relations to expand one’s network.
About the Offer
- Joining a team of experienced advocacy professionals, who work daily on advancing the rights and conditions of millions of affected patients;
- A role with a substantial amount of visibility and potential to learn accompanied by monthly travel and events;
- Full time contract and a benefits package;
- Possibility of hybrid work arrangement and/or a part-time arrangement.
Application instructions
EURORDIS and Mavence are committed to diversity and inclusion, which is why we encourage all applicants no matter their age, race, nationality, sexual orientation, disability, sex and gender identity, religion, or political affiliation to apply for vacancies.
Interested candidates are asked to submit their applications to Golyshin, Director Recruitment - Mavence at [email protected].
Applications would consist of a Cover Letter and a recent Curriculum Vitae will be processed on a rolling basis until the position is filled.
Deadline to apply: 12th January 2025 - 23:59.
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