Manager, Patient Advocacy
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Job Description
Manager of Patient Advocacy at Soleno, supporting initiatives for PWS community. Organizing events, maintaining communications, and tracking advocacy metrics.
Responsibilities:
- Organize and track patient advocacy initiatives
- Schedule and coordinate patient advisory boards, advocacy meetings, webinars, and family events
- Maintain calendars, project trackers, and action item lists across advocacy projects
- Support administrative needs and in-person Patient Advocacy events, as needed, and in coordination with Senior Director, Patient Advocacy and Government Affairs
- Represent Soleno at patient-facing events, conferences, etc. as needed
- Draft and maintain patient-friendly resources, newsletters, FAQs, and updates
- Ensure consistency and compliance of all external communications in compliance with regulatory and legal standards
- Prepare meeting minutes, summaries, and follow-up reports from Patient Advocacy engagements
- Maintain databases of patient advocacy organizations, key contacts, and stakeholder mapping/interactions
- Track community inquiries and feedback; log and escalate as appropriate
- Compile data for internal dashboards, slide decks, and leadership updates
- Support PA/GA invoices, track expenses, and support budget reconciliation for advocacy activities, including sponsorship and compliance activities
- Support activities with external vendors (e.g., event planners, design agencies, translation services, etc.)
- Support contracts and compliance documentation for patient-related activities
- Provide administrative support for collaboration between Patient Advocacy and Clinical Development, Medical Affairs, and Commercial
- Coordinate review cycles for patient education materials and advocacy content
- Assist with compliance submissions and documentation for patient engagement initiatives
- Collaborate with internal teams to ensure patient input is meaningfully considered across the product lifecycle
- Support internal training for company employees (clinical, commercial, field teams) on patient perspectives, disease burden, and empathy
- Track key performance indicators (KPIs) for advocacy programs (i.e., attendance, outreach metrics, attendee satisfaction)
- Generate regular internal reports summarizing activities, insights, and impact (i.e., PA event summaries, etc.)
- Maintain compliance records in line with company policies and industry standards
- Other administrative support of Patient Advocacy function as needed
Requirements:
- Bachelor’s degree in life sciences, communications, public health, or related field
- 3–7 years of experience in patient advocacy, patient engagement, community relations, or external affairs in the pharmaceutical/biotech or rare disease space
- Proven track record working with rare disease patient communities and advocacy organizations
- Strong interpersonal and relationship-building skills
- Excellent written and verbal communication skills; ability to simplify complex scientific/medical content into patient-friendly terms
- Analytical mindset — able to use professional expertise to solve moderately complex issues
- Project management skills; organized, able to drive multiple initiatives concurrently
- Emotional intelligence, empathy, and sensitivity to patient experiences
- Willingness to travel to events when needed (i.e., conferences, advocacy events) - Travel up to 30%
- Preferred: Understanding of regulatory and compliance constraints around patient engagement
- Experience using Veeva PromoMats
- Spanish (or other language) fluency to support diverse patient populations
- Master’s degree (public health, communications, or related)
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