Assoc Director, Patient Advocacy & Engagement

Alnylam Pharmaceuticals

10h•Hybrid

About The Position

The Associate Director, Patient Advocacy and Engagement, Pipeline Programs will play a critical role in driving patient-centric strategies and strengthening relationships with patient advocacy organizations. Reporting to the Sr. Director, Global Patient Advocacy Rare and Pipeline, the role will ensure alignment of patient advocacy efforts with selected clinical development programs to enable patient centred trial development and delivery. This position requires a dynamic leader with strong experience in patient advocacy and interpersonal skills. This position is hybrid onsite and remote working and will be primarily located at Alnylam’s Head Office in Cambridge, Massachusetts.

Requirements

Ability to travel approximately 30% of the time.
Solid experience in biotech and pharmaceutical industry.
3+ years of experience in patient advocacy, preferably in the biopharmaceutical industry.
Experience leading high-impact patient engagement programs at the national or regional level.
Exceptional relationship-building skills with the ability to influence and collaborate across internal and external stakeholders.
Strong understanding of the patient advocacy landscape, particularly in rare diseases.
Strategic mindset with the ability to translate complex strategies into actionable plans.
Proven ability to manage budgets and thrive within compliance operations frame works.
Excellent communication, presentation, and organizational skills.

Nice To Haves

Advanced degree in life sciences, public health, or a related field (PhD, PharmD, MD, or MBA a plus).
Proven expertise in rare diseases or conditions relevant to primary hyperoxaluria and acute hepatic porphyria is strongly preferred. Renal and cardiac experience would be welcomed.

Responsibilities

Develop and execute the patient advocacy strategy for programs within the pipeline portfolio, ensuring alignment with the medical and clinical program strategy.
Partner with internal stakeholders, including Development, Medical Affairs, Commercial, Market Access, and Public Affairs teams, to ensure a unified approach to patient advocacy efforts.
Develop strategic collaborations between internal and external stakeholders in line with mutual goals to enhance care for patients.
Enable patient input and engagement into regulatory and market access submissions.
Lead the implementation of advocacy programs that are culturally and regionally appropriate, ensuring a positive impact at the national and local levels.
Support Alnylam’s patient-focused culture collaborating closely with legal, compliance, and data privacy colleagues to ensure strict adherence to local codes and company policies.
Serve as the primary point of contact for international, national, regional and local patient advocacy groups, fostering trusted relationships that support mutual goals.
Identify and address unmet patient needs by facilitating programs, initiatives, and collaborations that enhance disease awareness, patient education, and access to treatment.
Enable patient and caregiver understanding of clinical research by developing and delivering education initiatives that improve awareness of Alnylam-sponsored clinical trials and build knowledge of RNA interference (RNAi), supporting informed and meaningful engagement in research.
Champion diversity, equity, and inclusion in clinical research by collaborating with patient advocacy groups to increase awareness, build trust, and support participation of underrepresented patient populations in clinical studies.
Develop initiatives to enhance disease awareness and improve time to diagnosis, as well as educate the patient community so that they are empowered to actively engage with their healthcare provider in the management of their disease.
Represent the organization at patient advocacy events, including conferences, meetings, and community forums, to strengthen external relationships.
Partner closely with development functions, including Clinical Operations, Clinical Research, VEST, and related R&D teams, to ensure patient perspectives and advocacy insights are incorporated across the clinical development lifecycle.
Collaborate with clinical and research stakeholders to inform trial design, feasibility, and execution by integrating patient and caregiver insights, with a focus on patient experience, access, and equitable participation.
Work cross-functionally with Market Access, HEOR, and evidence-generation teams to ensure patient needs and community perspectives are reflected in value frameworks, evidence strategies, and access considerations.
Facilitate bidirectional engagement between patient advocacy organizations and internal development stakeholders to support shared understanding, education, and alignment on disease burden, unmet needs, and research priorities.
Enhance internal understanding of patients, caregivers, and affected communities across R&D and enterprise stakeholders to support strategic decision-making that reflects lived experience and patient-centered outcomes.
Provide patient advocacy input and support for cross-functional initiatives and programs as required, including disease education, research enablement, and strategic planning efforts.
Lead the development of patient education materials, advocacy resources, and engagement plans in partnership with internal and external stakeholders.
Monitor and evaluate the impact of patient advocacy initiatives, ensuring continuous improvement and alignment with organizational goals.
Ensure all patient advocacy activities comply with regulatory, legal, and ethical standards.