Director, Patient Advocacy
About The Position
BlueRock Therapeutics is seeking a Director of Patient Advocacy to shape and execute its patient advocacy strategy across neurology and ophthalmology programs, with a focus on Parkinson’s disease and rare inherited retinal diseases, including retinitis pigmentosa, Usher syndrome, and cone-rod dystrophy. Reporting to the SVP, Early Commercial, Development Strategy & Operations, this leader will champion the perspectives and lived experiences of patients and caregivers throughout preclinical and clinical-stage programs, ensuring those perspectives inform company decisions. The Director will build trusted relationships with patient communities, advocacy organizations, disease foundations, and community leaders, and align internal teams to incorporate patient insights into research, clinical development, medical affairs, regulatory, and program decisions. The role also includes representing BlueRock externally, creating patient education and awareness initiatives, advancing health equity, and ensuring advocacy activities comply with ethical, regulatory, and company requirements. The position includes approximately 20–30% global travel.
Requirements
- 8–12 years of progressive experience in patient advocacy, public affairs, medical affairs, or a closely related function within pharmaceutical or biotech companies.
- Demonstrated expertise engaging with Parkinson’s disease communities and/or rare disease patient advocacy communities.
- Strong understanding of regulatory and compliance frameworks, including patient-group interactions, data privacy, fair market value, and transparency.
- Exceptional relationship-building skills and ability to earn trust among patients, caregivers, advocacy leaders, and internal stakeholders.
- Ability to influence cross-functional stakeholders and align teams around patient-centric priorities without direct line authority.
- Outstanding written and verbal communication skills, including the ability to craft compelling narratives for internal leadership and external patient audiences.
Nice To Haves
- Global advocacy experience spanning US and EU markets, including navigating cultural and regulatory nuances.
- Experience supporting regulatory submissions, advisory committee preparation, or labeling negotiations with patient-focused content.
- Advanced degree (MPH, MS, PhD, MBA, or equivalent) in a health, science, or communications-related field.
- Familiarity with cell therapy, gene therapy, or other advanced therapy modalities.
- Experience at a clinical-stage company and familiarity with early-pipeline patient engagement.
Responsibilities
- Develop and own a multi-year global patient advocacy strategy for Parkinson’s disease and primary photoreceptor disease programs, aligned with corporate milestones and regulatory timelines.
- Identify, map, and prioritize patient advocacy groups, disease foundations, and coalitions across the US, EU, and other strategic geographies; develop tailored engagement frameworks.
- Build and sustain trust-based partnerships with patient organizations, community leaders, and key opinion advocates.
- Represent BlueRock at patient advocacy conferences, community events, and scientific symposia.
- Design and facilitate patient advisory boards, councils, and forums, and translate patient and caregiver insights into actionable intelligence for internal stakeholders.
- Lead initiatives to advance health equity, reduce participation barriers, and amplify underrepresented voices.
- Develop education and community awareness initiatives for patients, caregivers, and advocacy organizations.
- Serve as the internal voice of patient communities and provide strategic counsel to R&D, Clinical Operations, Medical Affairs, Regulatory Affairs, and Program Teams.
- Communicate engagement activities and insights to educate the broader BlueRock organization.
- Partner with Clinical Development to incorporate patient insights into protocol design, including eligibility criteria, visit burden, patient-reported outcomes, site selection, and decentralized study approaches.
- Collaborate with Medical Affairs on patient-informed evidence strategies addressing disease burden, quality of life, and caregiver impact.
- Partner with Corporate Communications on external messaging and awareness campaigns.
- Collaborate with Bayer global advocacy counterparts on late-stage clinical programs and transition relationships as programs reach development milestones.
- Engage patient communities in early ophthalmology and neurology pipeline programs, building advocacy infrastructure ahead of pivotal trials and preparing communities for emerging data.
- Ensure advocacy engagements comply with global compliance, ethical guidelines, and regulatory expectations, including fair market value, transparency, and non-promotional interaction requirements.
- Maintain knowledge of regulations governing patient-group engagement and proactively update internal standard operating procedures.
- Travel globally approximately 20–30% of the time to patient organization meetings, centers of excellence, conferences, and community events.
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What This Job Offers
Job Type
Full-time
Career Level
Director
Education Level
No Education Listed
