Patient Advocacy & Public Affairs Lead - Rare Disease

About us

Based 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: AIR (products and services that promote respiration, from new-born to adult populations), RARE (treatment for patients with rare and ultra-rare diseases) and CARE (products and services that support special care and consumer-facing self-care).

We are proud to be the largest global pharmaceutical group to be awarded B Corp Certification, a recognition of high social and environmental standards. We are a reliable company that adopts and promotes transparent ethical behavior at all levels. 

We are committed to embrace diversity, inclusion and equal opportunities. In fact, we are a global family made up of different cultures, different genders, generations, ethnicities, abilities, sexual identities and many other enriching diversities. 

 

Chiesi UK

Chiesi 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.

Our 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.

 

What we offer

At 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.

 

Who we are looking for

Purpose

To 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. 

 

Essential 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. 

 

The 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. 

 

The 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.

 

The role will require UK and international travel. 

Profile

The job holder must have insight into the challenges associa