Executive Director

The PAP Foundation is a non-profit patient advocacy organization dedicated to finding a cure and improving the lives of those affected by Pulmonary Alveolar Proteinosis (PAP), a life-threatening lung disorder where naturally occurring surfactant abnormally builds up in the tiny air sacs (alveoli) of the lungs. PAP is not a single disease—it is a syndrome (a pattern of symptoms and signs) that occurs in multiple diseases, each quite rare. Altogether, these diseases cause PAP in about 7 out of every million people.

Through advocacy and collaboration, we promote research on PAP and provide information and support for PAP patients, healthcare professionals, and the public. The PAP Foundation values collaboration, innovation, and patient-centered approaches. We are a small, dynamic team dedicated to making a significant impact on the lives of those affected by PAP, fostering an environment where every contribution counts.

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Job Summary:

As the Executive Director of PAP Foundation, Inc., you will play a crucial role in steering our organization toward achieving its mission of advocating for patients through education, awareness, and community building. Join us at a pivotal time as we anticipate (i) Savara Pharma to soon complete its Biologics License Application (BLA) to the FDA for its inhaled recombinant GM-CSF drug, MOLBREEVI, for the treatment of aPAP in the United States, and (ii) Partners Therapeutics’ continued development of its inhaled recombinant GM-CSF drug, Leukine (branded as Sargmalin), following its approval in Japan for treating aPAP (the first regulatory approval of an inhaled recombinant GM-CSF product for aPAP).

Your leadership will be instrumental in developing and implementing strategies for event planning, patient outreach, physician engagement, and securing funds through grant writing. The next two years (2025 & 2026) will be particularly exciting for the PAP community, as Savara Pharma forecasts implementation of a widespread diagnostic test for autoimmune PAP (aPAP). We anticipate a highly active patient, physician, and pharma community accelerating education and awareness of PAP.

Key Responsibilities:

1. Event Planning and Management:
   • Lead the planning, organization, and execution of events aimed at patient advocacy, education, awareness, and fundraising, including East & West Coast Regional Education & Awareness Events and NORD-partnered meetings such as Patient-Focused Drug Development (PFDD) meetings with the FDA, ensuring effective capture and communication of patient perspectives to key stakeholders.
   • Coordinate with various stakeholders, including vendors, volunteers, and staff, to ensure seamless event management.
2. Patient Outreach:
   • Develop and oversee programs that effectively reach out to patients, providing them with necessary support and information.
   • Ensure patient feedback is integrated into organizational strategies and operations.
3. Physician Outreach:
   • Build and maintain relationships with physicians and healthcare providers to promote collaboration and support for our initiatives.
   • Organize workshops, seminars, or meetings to engage the medical community in our patient advocacy and education efforts.
4. Grant Writing:
   • Identify grant opportunities and lead the grant writing process to secure funding for our projects and initiatives.
   • Monitor and report on the progress of funded projects to stakeholders and grant providers.
5. Leadership and Management:
   • Provide visionary leadership to the organization, inspiring the team to achieve excellence.
   • Oversee the organization’s operational, financial, and administrative functions.
6. Strategic Planning and Execution:
   • Develop and implement strategies that align with the organization’s goals and mission.
   • Evaluate program effectiveness and make data-driven decisions for future initiatives.
7. Stakeholder Engagement:
   • Engage with various stakeholders, including patients, healthcare professionals, donors, and the community, to build support for the organization’s mission.

Preferred Qualifications:

• Proven experience in a leadership role, preferably in a non-profit or healthcare setting.
• Strong background in event planning, community outreach, and relationship building, including experience in planning and managing large-scale events such as Patient-Focused Drug Development (PFDD) meetings with the FDA.
• Familiarity with FDA processes and patient-focused drug development initiatives.
• Experience working with rare disease communities or non-profit organizations serving specific patient populations.
• Excellent grant writing skills with a track record of securing funding.
• Familiarity with non-profit financial management and budgeting.
• Exceptional communication and interpersonal skills.
• Ability to work flexibly and adapt to changing priorities.
• Self-motivated and able to work independently, managing deliverables within a 16-hour weekly commitment.
• Must be willing to travel for events as required, including regional and national meetings.

Preferred Education:

• Bachelor’s degree in a relevant field (e.g., Healthcare Administration, Non-profit Management). Master’s degree preferred.