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Some opportunities happen only once in a lifetime - like a job where you have the chance to change lives. At Alexion, people living with rare and devastating diseases are our Guiding Star. We are driven to continuously innovate and create meaningful value in all we do to help patients and families fully live their best lives. We value the uniqueness and diversity of our employees and recognize that nurturing the diverse perspectives and strengths of our people translates into innovative breakthroughs for patients.


Director, Patient Advocacy Lead North Cluster (Nordic Netherlands and Alpine), NF1 and other rare diseases

Location: Zurich, Switzerland, Stockholm, Sweden, or The Netherlands


Position Summary

Reporting to Head of International Patient Advocacy, this position is part of Alexion’s Global Patient Experience team and is responsible for leading the North Cluster’s patient advocacy strategy in NF1 as well as other TAs in the rare neurology, hematology and nephrology space, including select pipeline candidates of relevance to this cluster.

This role will find opportunities to drive advocacy engagement across the cluster to support the patient journey including accelerating the time to diagnosis, disease education and resources, treatment advances, and providing caregiver support to improve health outcomes.

The Director, Patient Advocacy Lead will be responsible for driving, building and enhancing strategic alliances with both disease-specific patient organizations and their umbrella groups, as well as other rare/ultra-rare disease-oriented organizations and other relevant stakeholders in response to patient needs and in support of Alexion’s global patient advocacy and medical objectives and related strategic goals.

Through understanding of the patient community, this individual will bring the patient perspective into Alexion decision making.


Job Duties & Responsibilities

  • Shaping and executing the patient advocacy strategy and plans across the North Cluster working closely with local Medical and Commercial organizations to support local strategies and objectives, and coordinating with critical internal partners, including Medical Affairs, Clinical Operations, Government Affairs, Market Access, Marketing, Corporate Communications, Regulatory, Legal and Compliance.
  • Driving, building and enhancing strategic alliances with relevant patient advocacy organisations both disease-specific and relevant umbrella groups (i.e pan-oncology, rare disease groups), as well as other rare/ultra-rare disease-oriented organizations
  • Linking appropriate patient groups with the information and resources needed to support patients and caregivers to advocate for appropriate care. Build a sense of community and collaboration among these groups and with Alexion.
  • In collaboration with appropriate Government Affairs and Market Access, supporting the advancement of policy positions that embrace open access to medicine, appreciation of innovation and the importance of optimal treatment.
  • Efficiently and effectively serve as a liaison to the rare disease community by working appropriately with global and international colleagues on cross-disease initiatives while prioritizing engagement on disease-specific work and ensuring coordinated outreach.
  • Contribute to collection of patient and family insights and proactively and routinely share insights from patient advocacy groups to drive and shape programs, research and activities and Alexion decision making.
  • Provide impactful points of connection for patient advocacy groups with Alexion employees including Medical Affairs, Market Access, Government Affairs & Policy, R&D, Clinical Operations, Corporate Affairs and other functions to partner on key initiatives. Foster strong partnership with Legal, Regulatory, Compliance and other functions on all engagement activities.
  • Stay current of new developments and ideas in the field of patient advocacy and incorporate such into the development and execution of programs.
  • Manage respective budget and coordinate related tasks.
  • Facilitate working with PAGs and patient communities while following relevant laws, regulations, policies and best practices.

Essential Qualifications

  • Bachelor’s degree with 10+years of progressive industry/relevant professional experience or 7+ years of patient advocacy experience, especially in this region
  • Broad knowledge of the biopharma industry; working knowledge of drug development, HEOR, access and reimbursement, and commercialization.
  • Superb communication skills, tact, composure, and confidentiality in order to coordinate complex patient issues, manage sensitive information, and participate in key inter-departmental interactions
  • Fluent English and in at least one major language of the North Cluster (Swedish, Dutch or German). Knowledge of other languages of North Cluster countries highly preferred
  • Robust knowledge of current compliance, legal, regulatory and other issues that impact the biopharmaceutical industry and its protocol for patient engagement
  • Outstanding interpersonal skills, ability to successfully influence without authority, and effectively work across functions and personalities
  • Demonstrated good judgment and ability to effectively prioritize workload
  • Entrepreneurial driven and highly collaborative across matrixed enterprise
  • Impeccable personal character and high integrity
  • Ability to work well under pressure and enjoys a fast-paced, often unpredictable environment

Preferred Qualifications

  • Existing relationships with relevant advocacy thought leaders
  • Expertise in orphan drugs
  • Experience with broader healthcare public relations and communications
  • Additional North Cluster’s relevant language skills

Alexion is a global biopharmaceutical company focused on serving patients and families affected by rare diseases and devastating conditions through the discovery, development and commercialization of life-changing medicines. Headquartered in Boston, Massachusetts, Alexion has offices around the globe and serves patients in more than 50 countries. Further information about Alexion can be found at: www.alexion.com.


Alexion is proud to be an Equal Employment Opportunity and Affirmative Action employer. We are committed to fostering a culture of belonging where every single person can belong because of their uniqueness. The Company will not make decisions about employment, training, compensation, promotion, and other terms and conditions of employment based on race, color, religion, creed or lack thereof, sex, sexual orientation, age, ancestry, national origin, ethnicity, citizenship status, marital status, pregnancy, (including childbirth, breastfeeding, or related medical conditions), parental status (including adoption or surrogacy), military status, protected veteran status, disability, medical condition, gender identity or expression, genetic information, mental illness or other characteristics protected by law. Alexion provides reasonable accommodations to meet the needs of candidates and employees. To begin an interactive dialogue with Alexion regarding an accommodation, please contact accommodations@Alexion.com. Alexion participates in E-Verify.


AstraZeneca completed its acquisition of Alexion, marking the creation of Alexion, AstraZeneca Rare Disease. If you’re interested in career opportunities with AstraZeneca, click here.

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Deadline: 04-05-2024

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