Global Patient Partnership Director

Job Title:                               Global Patient Partnership Director

Location:                              United States East Coast / Global (Remote with travel)

Travel:                                     Up to 30% (domestic and international)

Position Summary

Oak Hill Bio is a clinical-stage biotechnology company focused on acquiring and developing outstanding rare disease drugs that have been deprioritized by big pharma.

The person in this role will build and lead high-impact partnerships with the Angelman syndrome community, including patients, caregivers, and advocacy groups (e.g., FAST, ASF, ASA). This role ensures the patient and caregiver voice is meaningfully embedded into the rugonersen clinical strategy—addressing specific trial burdens such as intrathecal administration and sham controls across a broad age range. The person in this role serves as the primary liaison, translating community insights into actionable strategies across Clinical Development, Clinical Operations, Medical Affairs, Regulatory, and Communications.

Responsibilities

Strategic Advocacy, Patient/Caregiver Partnerships, & Community Engagement

• Develop and execute a global patient partnership strategy aligned with the rugonersen program.
• Establish transparent, long-term relationships with global Angelman syndrome advocacy organizations, family networks, and community leaders.
• Direct Company participation in advocacy meetings and manage processes for grants, sponsorships, and organizational collaborations.

Clinical Trial Integration, Engagement & Patient Voice

• Embed patient and caregiver perspectives into trial design, recruitment, retention, and endpoints, specifically addressing cognitive, communication, and procedural challenges (intrathecal delivery/sham-controlled visits).
• Partner closely with Clinical Development and Clinical Operations to minimize participation barriers and develop clear, compliant educational materials regarding trial rationale.
• Translate complex scientific and clinical concepts into accessible messaging for patients and families.

Cross-Functional Collaboration & Governance

• Act as the internal authority on patient/caregiver insights for senior leadership and program teams across Medical Affairs, Regulatory, and Corporate Communications.
• Establish organizational patient partnership principles, best practices, and compliance frameworks.

·      Demonstrates high performance, and strong collaboration.

·      Contributes to a positive team culture — supporting colleagues, sharing knowledge, and helping newer teammates find their footing.

• Brings a respectful, team-first attitude, and looks for chances to mentor their peers.
• All other duties as assigned by management.

Building the OHB Team

• Keeps patients at the center of every decision
• Balances their own strong work with leading the team to excellent results
• Works closely with other teams to achieve shared goals
• Grows people through coaching, and support, and asks for feedback in return

Qualifications & Experience

• Bachelor’s degree in a scientific, clinical, or healthcare discipline (e.g., Life Sciences, Biology, Nursing, Public Health) is required. An advanced degree (e.g., MS, MPH, MBA, PharmD, PhD) is strongly preferred.
• Typically requires a degree/masters and a minimum of 12 - 15 years of related work experience, or equivalent, in patient advocacy, patient engagement, medical affairs, or clinical development within biotech/pharma. Rare neurodevelopmental/neurogenetic disease experience strongly preferred.
• Experience working across clinical development and/or clinical trial programs preferred, ideally including blinded or procedurally intensive trial designs.

·      Experience translating community feedback into actionable recommendations.

• Demonstrated success building international advocacy partnerships.
• Proven track record of integrating patient perspectives into clinical trial programs, ideally involving procedurally intensive or blinded designs.
• Demonstrated experience working with rare disease patient communities and advocacy organizations;
• Experience with Angelman syndrome or other neurodevelopmental/neurogenetic disorder communities strongly preferred.
• Exceptional empathetic communication, relationship building and management, and strategic influence.

The base salary range provided is for US-based employees only, and is based on what we believe is a reasonable estimate for the base salary pay range for this job at the time of posting. Oak Hill Bio will use local market rates for roles outside the US. Actual base salary pay will be based on several factors, including geography. skills, competencies, experience, and other job-related factors permitted by law.

The specific statements shown in each section of this description are not intended to be all-inclusive. They represent typical elements and criteria necessary to successfully perform this position.