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Senior Director - Patient Advocacy

Summary

The Senior Director - Patient Advocacy is responsible for developing and leading Pharming's patient advocacy strategy and building strategic partnerships with patient advocacy organizations, rare and ultra-rare disease communities, patients, caregivers, and other relevant stakeholders in support of Pharming's existing and pipeline therapies across.

This leader will ensure that patient and caregiver perspectives, experiences, and unmet needs are appropriately incorporated into organizational decision-making and will serve as a key internal resource on the rare disease patient journey. Working cross-functionally, this leader will translate patient insights into meaningful strategies and initiatives across Clinical Development, Medical Affairs, Market Access, Marketing, Commercial, and patient support activities.

Additionally, this position is accountable for establishing the goals, objectives, and performance oversight of the field-based APDS Clinical Education (ACE) Team, in conjunction with Pharming's designated external partner, to support the APDS patient and caregiver community.

Responsibilities

Patient Advocacy Strategy & Engagement:

+ Lead the development and execution of Pharming's short- and long-term patient advocacy and engagement strategy, building sustained partnerships with key patient advocacy organizations and strengthening Pharming's reputation as a valued patient-centric partner.

+ Serve as an internal subject matter expert on patient and caregiver perspectives and the rare disease patient journey, ensuring relevant insights are appropriately incorporated into organizational strategy and decision-making.

+ Establish and maintain strategic partnerships with national, regional, and global patient advocacy organizations, patient leaders, caregivers, rare disease organizations, and other relevant external stakeholders.

+ Identify unmet needs and barriers across the patient journey, including diagnosis, disease burden, treatment access, adherence, caregiver burden, and quality of life, and partner cross-functionally to identify appropriate opportunities to address those needs.

+ Partner with advocacy organizations and other stakeholders on education and awareness initiatives that support rare disease research, patient-focused drug development, disease awareness, diagnosis, treatment access, and patient and caregiver support.

Patient Insights & Cross-Functional Collaboration:

+ Develop a structured approach to gathering, synthesizing, and communicating insights from patients, caregivers, advocacy organizations, advisory boards, conferences, and other appropriate engagement activities.

+ Translate patient and caregiver insights into actionable recommendations that inform Clinical Development, Medical Affairs, Market Access, Marketing, Commercial strategy, patient support programs, disease education, and lifecycle planning.

+ Lead patient advisory boards and other insight-generation activities to better understand the patient experience, unmet needs, treatment expectations, and barriers to care.

+ Collaborate with Clinical Development and Medical Affairs to appropriately incorporate patient perspectives into clinical development programs, including trial design, recruitment and retention considerations, patient communications, and disease education.

+ Provide patient and advocacy community perspectives to support pipeline development, launch readiness, and lifecycle planning for Pharming's current and future rare and ultra-rare disease programs.

Advocacy Partnerships & External Leadership:

+ Drive sustained engagement with key patient advocacy organizations, including the Immune Deficiency Foundation, Jeffrey Modell Foundation, Hereditary Angioedema Association, and other organizations relevant to Pharming's therapeutic areas.

+ Represent Pharming within the rare and ultra-rare disease community at advocacy meetings, conferences, advisory boards, community events, and other appropriate forums.

+ Identify and lead strategic partnerships, educational initiatives, grants, sponsorships, and other programs that address demonstrated patient and caregiver needs.

+ Monitor relevant healthcare policy and legislative trends affecting rare disease communities and collaborate with Market Access and other internal stakeholders to understand and address potential patient access implications.

+ Manage Patient Advocacy programs, partnerships, budgets, grants, sponsorships, and external vendors in alignment with organizational priorities and applicable compliance requirements.

APDS Clinical Education (ACE) Team:

+ Oversee, in collaboration with third-party management, a high-performing team of APDS Clinical Educators (ACE) focused on supporting the patient and caregiver community through disease-state education, genetic-testing education, HCP education, and resource support. Develop measurable KPIs to assess outreach and impact.

+ Provide leadership and support for the ACE Team related to patient and caregiver interactions and the team's role and scope of responsibilities.

+ Prepare key deliverables for appropriate internal stakeholders on ACE activity and collaboration.

+ Identify, develop, and lead opportunities for key strategic partnerships with relevant conferences and educational opportunities to support educational outreach.

+ Partner with internal departments to develop educational resources relevant to patient and caregiver needs that the ACEs can use to support their educational efforts in the patient community.

Leadership, Compliance & Operations:

+ Establish goals, objectives, and appropriate measures to assess the effectiveness and impact of patient advocacy strategies, partnerships, programs, and patient engagement initiatives.

+ Communicate effectively and partner with internal stakeholders and cross-functional teams, including Medical Affairs, Clinical Development, Marketing, Sales, Commercial Operations, Market Access, Patient Services, Legal, and Compliance.

+ Ensure Patient Advocacy and ACE activities comply with applicable legal, regulatory, privacy, industry, and Pharming requirements governing interactions with patients, caregivers, healthcare professionals, and patient advocacy organizations.

+ Maintain confidentiality of sensitive information and ensure protected health information and other confidential data are appropriately safeguarded.

+ Perform other duties as assigned.

Qualifications

+ BA or BS degree required; advanced degree in healthcare policy, public health, life sciences, business, or related field preferred.

+ Minimum of 10 years of experience in patient advocacy, patient engagement, patient support, community relations, or related functions within the pharmaceutical, biotechnology, healthcare, or patient advocacy sectors.

+ Immunology and/or metabolic disorders experience, along with rare or ultra-rare disease industry and brand launch experience, is strongly preferred.

+ Demonstrated understanding of the rare disease patient journey, including diagnosis, disease burden, treatment access, caregiver bu...

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Senior Director - Patient Advocacy

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