Senior Director - Patient Advocacy

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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 burden, and quality of life.
• Proven track record of developing patient advocacy strategies and building trusted relationships with national, regional, and global patient advocacy organizations and patient communities.
• Demonstrated ability to gather and translate patient and caregiver insights into actionable strategies and lead cross-functional initiatives across Clinical Development, Medical Affairs, Market Access, Marketing, Commercial, Legal, and Compliance.
• Strong knowledge of applicable legal, regulatory, compliance, privacy, and industry requirements governing interactions with patients, caregivers, healthcare professionals, and advocacy organizations.
• Strong strategic thinking, leadership, project management, organizational, communication, and presentation skills, with the ability to influence across functions and effectively engage senior leadership and external stakeholders.
• Experience with budgeting, grants, sponsorships, and external partner/vendor management preferred.
• Travel is estimated at 30% and will include visits to Pharming’s Warren, NJ offices, specialty society meetings, patient advocacy conferences, and other relevant community events.
• Commitment and alignment to Pharming’s mission, core values, and behaviors.

Who We Are

We’re built on a simple belief: people living with rare diseases deserve more. Pharming is a global biotechnology company taking on some of the toughest rare disease challenges. We develop and commercialize innovative therapies for rare and ultra-rare immunological and genetic diseases with significant unmet need, where our scientific and commercial expertise, long-term commitment, and real partnership can help advance care.

We put patients at the heart of our work. Their insights, along with those of caregivers, clinicians, scientists, and parters, shape our strategy, guide our decisions, and help turn science into meaningful progress. We keep it simple, act with urgency, and get it done – expanding access to approved therapies, advancing high-value pipeline programs, and building a leading global rare disease company.

Our vision is simple: a world where people living with rare diseases don’t wait for progress or care. Together with the communities who inspire us, we’re opening new possibilities – proving that breakthroughs aren’t just discovered. They’re created together.

Ready to make a difference? Join us.

What it’s like to work here

At Pharming, every role helps move rare disease therapies closer to the people who need them. We make it happen together, across teams, disciplines, and borders, because breakthroughs don’t happen in silos. Rare diseases are complex, and meaningful progress takes people who ask better questions, challenge each other, and turn insight into action. Here, you won’t work on the sidelines. Pharming is a place for builders, problem-solvers, and bold thinkers who move with urgency, take ownership, and stay focused on what matters most: improving the lives of people living with rare diseases. Advancing rare disease care isn’t the work of one team or one leader. It’s all of us, building what’s next together.

Salary Range

Pharming takes into consideration a combination of candidate’s work experience, training, and education, as well as the scope of the role, complexity, and external market and internal value when determining a salary level.

The base salary range for this job is from $245,000 to $285,000per year.

• Flexible hybrid work schedule to promote a healthy work-life balance
• Competitive compensation package including annual target bonus
• Long-term incentive program
• 401(k) plan with company match
• Paid Time Off (PTO)
• 13 Company Holidays per year

Other Benefits

• Excellent benefit plans including medical, dental, and vision
• Flexible spending accounts
• Company-provided life insurance, short-term disability, and long-term disability plans
• Optional accident, hospital indemnity, critical illness, and pet insurance plans
• Health and wellness program
• Choice of company provided mobile phone or cell phone stipend

Additional Information

Pharming Healthcare, Inc. is a merit-based equal opportunity employer. We do not discriminate in recruitment, hiring, training, promotion or other employment practices for reasons of race, color, religion, sex, national origin, age, sexual orientation, marital or veteran status, disability, or any other legally protected classes.

An applicant requiring an accommodation in connection with the hiring process and/or to perform the essential functions of the position for which the applicant has applied should make a request via email View email address on click.appcast.io.

Unsolicited resumes from agencies should not be forwarded to Pharming. Pharming will not be responsible for any fees arising from the use of resumes through this source. Pharming will only pay a fee to agencies if a formal agreement between Pharming and the agency has been established. The Human Resources/Talent Acquisition department is responsible for all recruitment activities; please contact us directly to be considered for a formal agreement.