Rare Diseases International (RDI) is the global alliance of Persons Living With a Rare Disease (PLWRD) of all nationalities and across all rare diseases. RDI’s Members include national alliances of rare disease patients, regional networks, and disease specific international federations that together cover more than 100 countries.
RDI’s mission is to be a strong common voice for PLWRD and their families around the world. RDI’s vision is a world where PLWRD experience overall a better life through better recognition and support, and improved health and social services.
Main scope of the position
The Public Affairs Manager (PAM) is responsible for coordinating and strengthening the advocacy efforts of RDI and its members, as well as empowering rare disease patient groups to act at global, regional, and national levels. The Public Affairs Manager is instrumental to ensure that the priorities and contributions of RDI Members feed into the planning and definition of RDI’s advocacy activities, that feedback is regularly provided as well as guidance on the process to follow. Ultimately, the Public Affairs Manager will aim to achieve a high level of integration between national and international advocacy activities, by co-creating the tools and methods required to have a stronger impact towards better policies for persons living with a rare disease and their families.
The PAM works in close coordination with the RDI Executive Director, RDI Secretariat, and other colleagues dedicated to international advocacy. The PAM also manages the RDI Advocacy Committee and ensure its input in RDI’s position documents.
Responsible to: Executive Director
Salary: 40 000 euros gross per annum, pécule de vacances, and additional expenses
Contract: Full-time, permanent
Start date: January 2022
The Public Affairs Manager is responsible for:
- Promoting rare diseases as an international policy priority, which includes advocacy efforts to influence the United Nations (UN) policy agenda through, for example:
- implementation of the UN Political Declaration on Universal Health Care;
- finalising the adoption and follow-up on the implementation at a national level of the UN Resolution on addressing the challenges of PLWRD and their families;
- supporting RDI’s activities within the NGO Committee for Rare Diseases at the United Nations.
- In collaboration with the RDI Liaison in Geneva, identifying and reaching out to additional Agencies and Programmes within the UN System that have an impact on the life of PLWRD and their families, such as the UNICEF, the OHCHR, the World Bank, the UNDP, UN DESA, etc. including:
- initiating, maintaining, and developing meaningful relationships with any additional UN Agencies and Programmes;
- preparing, framing and/or participating to online and/or F2F meetings with the UN Agencies and Programmes representatives.
- Supporting the development of RDI Advocacy Committee, namely:
- managing the process to secure contributions from RDI Members into specific advocacy files, with international relevance and impact;
- supporting RDI Members with dedicated capacity-building activities, including developing distance learning tools, webinars, and F2F meetings with RDI Members.
- Managing RDI’s involvement in the Rare Disease Day (RDD), including:
- supporting RDI’s involvement within the RDD governance as part of the EURORDIS Steering Committee of RDD;
- strengthening the participation of RDI National Alliances as official partners of Rare Disease Day and the participation of organizations outside Europe;
- supervising and coordinating activities in preparation for the RDI RDD policy event, planned for February or beginning of March 2022.
- Monitoring of daily media and publications from the international institutions for issues concerning rare diseases, directly or indirectly, and reporting key issues in a synthesized manner to colleagues;
- Researching international policy issues and creating reports for internal and external use;
- Mapping of international key stakeholders, in collaboration with the RDI Liaison in Geneva;
- Coordinating with the RDI Executive Director and RDI Secretariat to provide input for communications and events;
- Conducting a range of advocacy and communication activities to support the development of campaigns at an international level.
Required experience & skills
- Excellent English language skills are essential for this position. Any other language is desirable;
- Minimum of 5 years’ education in Political Science, International Relations, Law, or a related field;
- Experience in international public affairs and advocacy; and knowledge of rare disease patient organizations or advocacy groups is desirable;
- IT literacy including Word, Excel, PowerPoint, and project management software;
- International and inter-cultural profile, able to work with a wide variety of people;
- Empathy, must have an interest in the mission and content of the organization;
- Interpersonal skills to work with the RDI Executive Director and the RDI Secretariat;
- Excellent verbal and written communication skills, reflecting an appreciation that each audience requires its own approach;
- Strong analytical skills and excellent organizations skills to manage the workflow;
- Ability to work independently and pro-actively.
Please send your CV and cover letter in English to [email protected].
Deadline for applications: 22 October 2021. Interviews will begin as soon as suitable candidates apply.
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