Rare Disease Patient Advocacy Lead

3 weeks ago


Manchester, United Kingdom Chiesi Farmaceutici Full time

**Date**: 25 Jul 2023

**Department**: Rare Medical Affairs

**Team**: Mktg, Market Access, Bus. Excellence & Med. Affair

**Job Type**: Direct Employee

**Contract Type**: Permanent

**Location**:
Manchester, GB

We have an exciting opportunity for a Rare Disease Patient Advocacy Lead to join our Global Rare Disease team. This role is remote, with a requirement for attending ad hoc meetings in Manchester head office.

At Chiesi it is our people who are at the heart of what we do and achieve. A proud family business we are a Top Employer and a Great Place to Work in the UK.

In the role of Rare Disease Patient Advocacy Lead you will lead the planning, management and delivery of Chiesi’s UK/ROI external advocacy programme for our rare disease portfolio. The role will primarily focus on advocacy and engagement with patient groups, key opinion leaders and supporting the development of clinical advocates.

In addition the role will require timely horizon scanning of an increasingly complex and challenging external healthcare policy environment and using the information to shape and influence strategy and tactics.

We offer a great benefits package including Pension, Private Medical and Dental cover, 25 days leave, competitive salary, and an annual bonus scheme.

We look forward to welcoming you to our team.

Purpose

To lead the planning, management and delivery of Chiesi’s UK/ROI external advocacy programme for our rare disease portfolio. The role will primarily focus on advocacy and engagement with patient groups, key opinion leaders and supporting the development of clinical advocates. In addition the role will require timely horizon scanning of an increasingly complex and challenging external healthcare policy environment and using the information to shape and influence strategy and tactics.

A critical element of this role will be to identify patient organisations and influencers and establish positive relationships to improve patient access to medicines for rare and ultra-rare diseases.

The role will be responsible for developing the 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 to the Head of Medical Affairs, Rare Diseases and will work closely with members of the cross-functional team. This will require regular reporting of the impact of the UK programme to both Global and UK senior management teams.

The role will require some UK and international travel.

Profile

The job holder must have a strong scientific / medical background with insight into the challenges associated with patient access to medicines for rare diseases. The role will require excellent knowledge of current healthcare policy, access routes for medicines and healthcare system knowledge across the UK.

The 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.

To 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.

The individual should also have detailed knowledge of the ABPI / IPHA Code of Practices and be able to critique work and/or proposals to ensure compliance with the Code and foresee/mitigate potential risks to plans.

Main Responsibilities

**Overarching**:
Develop, manage, and implement the UK/ROI rare disease advocacy programme
Support Head of Medical Affairs, Rare Diseases with budget management for programme
Provide accurate and timely reports of progress of the plan
Provide accurate and timely updates of patient organisation insights and associated risks/issues for Chiesi
Effective supplier management
Active participation in Global projects

**Stakeholder management**:
Build strong and valued relationships with current and evolving patient organisations to appropriate solutions.
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.
Work alongside medical team colleagues to develop and foster positive working relationships with patient organisations and societies.
Identify and develop strong relationships with key stakeholders in the patient advocacy community to promote common interests in relation to Chiesi GRD's disease areas.
Act as the company's representative to patient advocacy organisations and maintain and develop relationships with key


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