PSelect how often (in days) to receive an alert: /ph3Patient Advocacy Public Affairs Lead - Rare Disease /h3pDate: 24 Jul 2025 /ppDepartment: EU Int'l Local Medical Affairs /ppBusiness Area: Mktg, Market Access, Bus. Excellence Med. Affair /ppJob Type: Direct Employee /ppContract Type: Permanent /ppLocation:pRemote, GB /p /ppstrongemAbout us /em /strong /ppBased in Parma, Italy, Chiesi is an international research-focused pharmaceuticals and healthcare group with over 85 years’ experience, operating in 30 countries with more than 6,000 employees (Chiesi Group). To achieve its mission of improving people’s quality of life by acting responsibly towards society and the environment, the Group research, develops and markets innovative drugs in its three therapeutic areas: strongAIR /strong (products and services that promote respiration, from new-born to adult populations), strongRARE /strong (treatment for patients with rare and ultra-rare diseases) and strongCARE /strong (products and services that support special care and consumer-facing self-care). /ppWe are proud to be the largest global pharmaceutical group to be awarded strongB Corp Certification /strong, a recognition of stronghigh social and environmental standards. /strong We are a strongreliable /strong company that adopts and promotes strongtransparent ethical behavior /strong at all levels. /ppWe are committed to strongembrace diversity, inclusion and equal opportunities. /strong In fact, we are a global family made up of different cultures, different genders, generations, ethnicities, abilities, sexual identities and many other enriching diversities. /ppstrongChiesi UK /strong /ppChiesi UK is the number one affiliate of the Chiesi Group and works on important therapy areas, such as neonatology, organ transplantation and rare diseases, alongside our treatments for respiratory conditions. We are proud to be a B Corp company, committed to using business as a force for good and always pursuing high social and environmental standards, to ensure the best outcomes for our people, patients and communities. /ppOur shared values of integrity, trust and innovation help us build authentic and transparent relationships, with the focus always remaining on the patient. Further, we pride ourselves on inclusivity and appreciate everyone’s unique talents, always encouraging people to share their perspectives and ideas. /ppstrongWhat we offer /strong /ppAt Chiesi, we offer a work environment where individuals can reach their full potential and build meaningful careers. We are committed to our people and in April we were thrilled to be recognised as one of the 2024 UK Best Workplaces. This award coming on the back of being certified as a UK and European Top Employer for nine consecutive years. Our people are our greatest asset and we celebrate that “Everyone of us is different. Everyone of us is Chiesi.” We continuously strive to enrich our employees personal and professional lives through our competitive benefits, services and programmes. /ppstrongWho we are looking for /strong /ph3ubPurpose /b /u /h3pTo lead the planning, management and delivery of Chiesi’s UK external policy and advocacy programme for our rare disease portfolio within the UK and Ireland rare disease Business Unit. The role will primarily focus on advocacy, public affairs and engagement with patient groups, key opinion leaders and supporting the development of clinical and policy advocates. The role will require a knowledge of the healthcare system in UK and routes for access to medicines, as well as timely horizon scanning of an increasingly complex and challenging external healthcare policy environment. /ppEssential elements of this role will be to use insights to shape and influence strategy and tactics, identify relevant policy makers, patient organisations and influencers and establish positive relationships. The goal will be to shape and influence policy direction within the UK healthcare system to improve patient access to medicines for rare and ultra-rare diseases. /ppThe role will be responsible for developing the public affairs and advocacy programme, supporting materials, managing external suppliers and working cross functionally. A critical success factor will be establishing strong relationships with relevant teams in UK affiliate and Global to ensure that up-to-date intelligence is shared, and the role adds measurable value to the business. /ppThe role will report directly to the Head of Medical Affairs of Rare Diseases and a dotted line to the Senior Director Public Affairs and Communication. The role will also work closely with Chiesi Dublin office, market access and field-based colleagues to ensure barriers to access at all levels of the system are fully understood. This will require regular reporting of the impact of the programme to both Global and UK senior management teams. /ppThe role will require UK and international travel. /ph3ubProfile /b /u /h3pThe job holder must have insight into the challenges associated with patient access to medicines for rare diseases. The role will require excellent knowledge of current healthcare policy, policy development processes, access routes for medicines and healthcare system knowledge across the UK. /ppThe job holder will have a proven track record of establishing external collaborative relationships and/or delivery of policy-based initiatives that deliver value for both the customer and the business. Additionally, the job holder must be able to develop strong internal and external partnerships to gain buy-in and support for proposals. /ppTo succeed in this role, excellent communication and influencing skills combined with professional gravitas will be required, to engage effectively and network with senior policy leads as well as Chiesi senior leadership teams. /ppThe individual should also have detailed knowledge of the ABPI Code of Practice and be able to critique work and/or proposals to ensure compliance with the Code and foresee/mitigate potential risks to plans. /ph3ubMain Responsibilities /b /u /h3pstrongOverarching: /strongbr• Develop, manage, and implement the UK rare disease advocacy and public affairs programmebr• Support Head of Medical Affairs Rare Diseases with budget management for programmebr• Work cross-functionally within UK affiliate and with global teamsbr• Provide accurate and timely reports of progress of the planbr• Provide accurate and timely updates of policy insights and associated risks/issues for Chiesibr• Effective supplier managementbr• Active participation in Global projects /ppstrongStakeholder management: /strongbr• Develop trust and build meaningful relationships with key policy influencers and policy decision-makers.br• Identify and develop strong relationships, working alongside medical team colleagues, with critical patient advocacy stakeholders and professional societies to advance common interests relating to Chiesi GRD’s disease areas.br• Act as the company representative for patient advocacy organizations, maintain and enhance relationships with key patient advocacy partners,br• Mobilize PAGs and key KOLs/Scientific Societies/political networks in support of our challenges and opportunities.br• Develop and implement projects and activities (in line with the Global and EU Patient Advocacy plan) with patient advocacy groups and other related stakeholders to improve the standard of care in the UK, educate patient groups and to support market access, pricing reimbursement and Government Affairs efforts.br• Educate PAGs in HTA contributions to support patients' access to treatment.br• Connect relevant Chiesi personnel with senior NHS customers to enable swift decision making on key business issues and to develop longer term opportunities for dialogue at an executive level. /ppstrongHealthcare policy management: /strongbr• Share timely insights with appropriate brand team members to inform current and future brand plans.br• Monitor legislative developments and emerging trends related to rare diseases, and develop strategic action plans aligned with business objectives. /ppstrongWays of working: /strongbr• Create collaborative working relationships with relevant Chiesi teams to ensure effective communication of policy insights, risks and opportunities to support the harmonisation of business strategies and effective execution of commercial plansbr• Develop a strong internal network with Global teamsbr• Contribute to development of strategic recommendations and tactical plans for implementation on a local level including stakeholder maps and engagement plansbr• Work in close contact with the Europe EM Patient Advocacy Sr.Manager and with the Public Affairs team to support company’s success and take patient and patient advocate needs into account as business decisions are made.br• Proactively manage the UK rare disease advocacy work programme with effective working relationships with consultancies and suppliers of servicesbr• Establish, track and report on project plans, ensuring regular and timely progress updates are provided to senior management and cross functional teamsbr• Control budget spend, tracking expenditure and measuring the return on investmentbr• Ensure strict compliance of all recommended activity to both company standards (SOPs) and the ABPI Code of Practicebr• Ensure Chiesi company values underpin all ways of working and delivery of the public affairs programmesbr• Respond and deliver to ad hoc work requests from the Head of Rare Diseases.br• Comply with the Company Code of Ethics. /ph3ubSkills and Experience /b /u /h3p• Excellent knowledge of the UK healthcare system and relationships with external stakeholders, with a specific focus on patient advocacy.br• Ability to adapt insights from Chiesi Dublin colleagues to inform the advocacy and policy influence plan for Irelandbr• Knowledge of NHS decision-making processes for approval and funding of medicines for rare diseasesbr• Able to navigate in complex environments, creating strong networks of trust support towards various stakeholders, internally externally.br• Mandatory previous professional experience in Rare Diseases, with a track record of key initiatives carried out with the rare disease community (PAGs, KOLs).br• Detailed knowledge of the main policy challenges associated with medicinesbr• Experience of managing budgets for projectsbr• Experience of undertaking desk-based research and collating findings into a written report /ph3ubValues and Behaviours /b /u /h3p• Drive and enthusiasm to be self-motivated to perform accurate and detailed work and deliver work to fixed deadlines.br• When representing Chiesi to stakeholders, communicate and behave with professionalism and gravitasbr• Personal effectiveness; logical, quick and flexible in the appraisal of situations and policy issuesbr• Communication skills; strong communication and interpersonal skills and be able and confident to represent Chiesi with senior policy makers and their teamsbr• Work in teams; the ability to work well in a team environment but also to work under own initiative. Be able to take direction, deliver outputs on time and report progress on work with othersbr• Drive for Excellence; a concern for working to high standards, accuracy and quality and a willingness to learn new skills, competencies and behaviours.br• Innovative approach: the desire to identify and recommend potential process improvements /ppChiesi UK is committed to valuing diversity and promoting equality through a policy of treating all its employees and job applicants fairly and equally. Chiesi UK will take all reasonable steps to employ, train and promote employees on the basis of the evidence of competencies required, individual merit and qualifications without regard to race, colour, ethnic origin, nationality, national origin, religion or belief, sex, sexual orientation, marital status, age or disability. We will also take all reasonable steps to provide a work environment in which all employees are treated with respect and dignity and that is free from discrimination, harassment and victimisation based upon an employee's race, colour, ethnic origin, nationality, national origin, religion or belief, sex, sexual orientation, marital status, age or disability. /ph3DISCOVER ALL OUR JOB OPPORTUNITIES /h3h3Screen readers cannot read the following searchable map. /h3 #J-18808-Ljbffr