Job Details

Requisition Number 18-0121
Post Date 4/25/2018
Company Akcea
Title Patient Advocacy Lead – UK, Ireland & Nordics
Employment Type Full Time

Akcea Therapeutics is a biopharmaceutical company focused on developing and commercialising drugs to treat patients with serious rare diseases. Our priority is to bring important new therapeutics to patients in need. In order to do so, we must drive clinical program execution, understand patient and physician needs and work with regulators to gain global approval and market access to these new therapeutics. Akcea has a portfolio of development-stage drugs covering multiple targets and disease states using advanced antisense therapeutics.

Akcea was established by Ionis Pharmaceuticals in late 2014 and was listed on the NASDAQ stock exchange in July 2017 under the symbol “AKCA.” Akcea is a global company headquartered in Cambridge, MA with offices in Carlsbad, CA and across the EU and Canada. 

In preparation for these potential approvals, Akcea has established a presence across the European Region and now wishes to appoint an in-country Patient Advocacy Lead.

Patient Advocacy Lead – UK, Ireland & Nordics

Reporting to the Medical Director, UK, Ireland & Nordics, the Patient Advocacy Lead will be responsible for managing and implementing patient and stakeholder advocacy and related policy initiatives in the region (UK, Ireland & Nordics)

In this role the Patient Advocacy Lead will support the implementation of patient support programs to assist patients in initiating and continuing volanesorsen and inotersen therapy.  Supporting the cross functional team in Market Access related matters through establishing and executing disease and patient focused Public Policy activities in the region and developing Patient Advocacy strategies.

The successful candidate will be based in Akcea’s UK office, Weybridge, Surrey and will work closely with the cross-functional team in the region and across Europe and will be responsible for projecting the highest values and ethics consistent with Akcea’s corporate policies and values at all times.

Primary Position Responsibilities/Tasks: 

  • Develop and implement Patient/Caregiver Advisory Panels/Focus Groups/ surveys to engage and understand the perspective of patients, caregivers and advocacy groups within the rare disease field
  • Develop and manage patient and stakeholder advocacy and related policy initiatives
  • Work closely in partnership with key stakeholders in the bio-tech and research community to ensure that addressing patient need remains central to strategies and outputs
  • Conduct disease and diagnostic awareness within the therapeutic area
  • Obtain information on the needs of PAGs and find common objectives between the PAGs and Akcea’s goals to help patients get proper diagnosis and treatment
  • Support the development and roll-out of patient support programs with the cross functional team to assist patients in initiating and continuing volanesorsen and inotersen therapy
  • Assess gaps to support creation and delivery of innovative patient-focused communication, education and disease awareness in close cooperation with industry team leaders
  • Represents Akcea Therapeutics in on and off-site meetings with patient advocate thought leaders; develops and delivers external presentations to professional organisations and patient advocacy groups
  • Support county Medical Director and cross functional team in market access related topics based on market and patient organization local situation
  • Focus on public policy activities
  • Being aware of local compliance processes related to patient advocacy groups
  • Develop patient advocacy strategies
  • Organize international patient organization alliance meetings
  • Organize patient organization advisory boards
  • Diagnostic patient identification strategy development

Experience, Skills & Behaviours:

  • Undergraduate degree or its international equivalent from an accredited institution is required
  • Experience of working with rare diseases
  • A high level of energy and passion towards patients, innovative science and public health
  • A desire to work in the corporate culture of a highly innovative company aimed at redefining health, and transforming lives with new medicine
  • Working knowledge and appreciation of the complexities of the drug development process and regulatory requirements
  • Knowledge of the guidelines and policies affecting interactions with patient organisations
  • Fluency in English, written and spoken, additional languages (Swedish, Danish) would be beneficial
  • Must be able to travel approximately 50%
  • Working knowledge of all MS Office Suites (Word, Excel and PowerPoint)
  • Strong multi-tasking, time management, and organisational skills
  • Self starter, ability to take initiative and work both independently and in a team environment


Excellent salary and benefits package offered

as well as the opportunity to work in an inspiring, strongly team-orientated environment

of high personal engagement with a drive for joint success.


For more information on Akcea, please visit our website:

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