Director, Advocacy and Patient Engagement

Silver Spring, Maryland OR Fully Remote

The Pulmonary Hypertension Association has retained Careers In Nonprofits to help with this hire. Please submit a resume to aborbee@cnpstaffing.com with “Director, Advocacy and Patient Engagement” in the subject line.


Director, Advocacy and Patient Engagement


Founded in 1991 by patients, for patients, the Pulmonary Hypertension Association (PHA) is the oldest and largest nonprofit patient association in the world dedicated to the pulmonary hypertension community. Pulmonary hypertension (PH) is a rare, chronic and life-threatening disease of the lungs for which no cure currently exists. Our mission is to extend and improve the lives of those affected by PH. To achieve our mission, PHA engages people with PH and their families, caregivers, healthcare providers and researchers worldwide who work together to advocate for the PH community, provide support to patients, caregivers and families, offer up-to-date education and information on PH, improve quality patient care and fund and promote research.

PHA seeks mission-driven, talented professionals to join our team of dedicated employees working to advance our mission and improve the quality of life of those who live with this deadly lung disease.


The Director, Advocacy and Patient Engagement leads PHA’s support and education programs for people living with PH and their loved ones. Together, and with the engagement of numerous volunteer leaders and volunteer committees, the team executes a portfolio that includes PHA’s in-person, digital and print educational opportunities as well as in-person and virtual support. The Director works closely and collaboratively with other PHA departments and other internal and external stakeholders to ensure the patient voice is represented in PHA’s communications, education, programs, and activities. The Director manages the Patient Education Program Manager, Patient and Caregiver Programs Program Manager, and department Administrative Assistant.


  • Direct PHA’s education and support programs and activities for individuals living with pulmonary hypertension and their loved ones including goal setting, program planning and evaluation. Support advocacy and treatment access activities and ensure consistency and affinity across all Advocacy and Patient Engagement department program areas.
  • Manage multiple program funding streams and budgets, including timely execution of program commitments within budget and recognition of program industry partners. Report on program outcomes and financial reporting to internal and external stakeholders, including industry partners.
  • In partnership with Vice President, Development and Industry Relations, build and maintain productive relationships with industry partners to ensure partners understand and are engaged in PHA’s patient and family centered programs and resources.
  • Engage multi-stakeholder volunteer committees to ensure that PHA’s patient and family centered resources are guided from the beginning by members of the intended audience and are medically accurate.
  • Develop a cycle to evaluate print and electronic resources, determine need for, and create content and strategy for new and updated resources. Collaborate internally with PHA’s Communications and Marketing team to develop communications plans, design and production of new and updated materials for, and to promote patient and family centered programs and resources.
  • Conduct community needs assessments to identify knowledge gaps and topic priorities and apply and share learnings internally and externally to develop programs, strategies, communications and activities to meet community needs.
  • Develop policy for patient education approach that takes into consideration patient and caregivers’ knowledge gaps, as determined by the annual assessment.
  • Ensure PHA’s patient education program includes culturally appropriate health education information and materials using adult learning theory in a multi-media approach (online self-administered, live in-person, live virtual, podcasts, written briefs, infographics, etc.).
  • Develop, execute and analyze evaluation processes to determine program and service outcomes. Utilize results to analyze impact, implement changes and ensure programmatic excellence.
  • Oversee planning, development and execution of patient and family centered programming at PHA’s Conference and other in-person events, as managed by the Patient Education Program Manager and Patient and Caregiver Program Manager.
  • Facilitate the inclusion of advocacy and treatment access content in PHA’s patient support and patient education activities.
  • Represent PHA in select coalitions relevant to PHA’s legislative and regulatory advocacy goals.
  • Serve as a face-of-the-organization to PH community members and the public, in-person and virtually, as well as with associated disease patient advocacy organizations.


  • 100% employer paid medical, dental, vision, life and disability plans for employees
  • Paid holidays, vacation, sick and personal days
  • Transportation subsidy (parking or public transit)
  • 403(b) retirement plan
  • Bagel Fridays!


The Pulmonary Hypertension Association is proud to be an equal opportunity employer, fostering a workplace that celebrates diversity and inclusion and is free from discrimination and harassment. Each applicant will be considered for employment, regardless of his/her/their age, race, color, national origin, ancestry, religion, sex, sexual orientation, gender identity or expression, marital status, pregnancy, physical or mental disability, genetic information, veteran status, uniformed servicemember status or any other status protected by applicable federal, state or local laws.

For more about PHA see: www.PHAssociation.org

PLEASE NOTE: PHA employees are currently working from home due to COVID-19 conditions. We plan to return to the office when it is safe to do so. This position may begin on a remote basis for local candidate, but will eventually be an in-office position (for local candidates). Fully remote candidates will also be considered.



  • Bachelor’s degree required; background in social work, health policy, communications, public relations or similar field preferred. Equivalent experience will be considered.
  • Minimum of 5 years of leadership experience in a nonprofit organization with a needs-based or underserved constituency, preferably disease related, including program management and evaluation, budget planning and management, and supervision.
  • Experience engaging volunteers and facilitating volunteer leadership.
  • Ability to build rapport with a wide variety of stakeholder groups and communicate about difficult situations in a tactful but productive manner.
  • Experience building, activating and overseeing volunteer committees to advance multiple high-quality work products simultaneously.
  • Experience creating data-driven program evaluation.
  • Proven ability to manage multiple funding streams and budgets, lead and scale programs based on funding availability and manage vendors for timely, high-quality products.
  • Highly organized, solutions- and process-oriented, with ability to anticipate, troubleshoot and problem solve, work as a collaborative team member and independently on multiple priorities, under tight timeframes.
  • Excellent verbal and written communication and presentation skills.
  • Familiarity with adult learning concepts and experience in online and in-person adult education development and delivery a plus.

Reports to:

  • Vice President, Advocacy and Patient Engagement


  • Patient Education Program Manager
  • Patient and Caregiver Programs Program Manager
  • Administrative Assistant

WORKING CONDITIONS: Working conditions are normal for an office environment. Work requires occasional weekend and/or evening work. During peak times, travel up to 25% may be required.



SALARY: $80K-$95K (Commensurate with experience)

LOCATION: Silver Spring, Maryland OR fully remote

HOURS: Full time, Permanent

We’d love to hear from you.

The Pulmonary Hypertension Association has retained Careers In Nonprofits to help with this hire. Please submit a resume to aborbee@cnpstaffing.com with “Director, Advocacy and Patient Engagement” in the subject line.

Know someone who would be a great fit? Feel free to send us their resume as well.

About Careers In Nonprofits

Careers In Nonprofits is a seven-time award winning Best of Staffing recruiting firm, exclusively serving the nonprofit sector. Since 2006 we have provided temporary, temp to hire, and direct hire services to over 600 nonprofit organizations throughout the US. Our mission is to connect the best people with the best causes. We successfully fulfill this mission by identifying client needs and candidates career goals, matching them through a proven search process that works. For more information, please visit our website at www.careersinnonprofits.com.



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