Senior Director of Patient Advocacy Programs | Aplastic Anemia and MDS International Foundation

Senior Director of Patient Advocacy Programs

The Aplastic Anemia & MDS International Foundation is the world's leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases. 


Summary:   Directs the design, implementation, and evaluation of all patient centric programs and services

Supervises:  Director of Patient Education, Patient Educator, Program Support Specialist



  1. Works with the CEO using a human-centric design approach, creates the strategic direction for all patient programs, including the patient learning opportunities, support connections, and patient navigation.
  2. Directs the design, implementation, and evaluation of services for patients, families, and caregivers.
  3. Builds and maintains systems and processes to ensure efficient and effective methods of input. Develops metrics to properly assess impact of programs and responds to feedback by refining offerings to best meet patient needs.
  4. Develops multiple/flexible program experiences. Uses innovation methodology for development and design. Leverage best practices, learnings, and evaluation to make program improvements. Ensure all programs are integrated with other organizational programs and initiatives.
  5. Standardizes programming across diseases, within a variety of models, to ease implementation, while supporting customization for audience. Scales in a way that ease replication.
  6. Directs the online and in-person learning events for patients and families including overseeing content development and presenter selection.
  7. Reviews, updates, develops, and replaces as needed, all patient education materials – both print and electronic - to ensure that most current and accurate information is available for the respective audiences.
  8. Contributes to the Foundation’s communications calendar for print and electronic messaging.
  9. Assists in preparation of funding proposals to corporate sponsors.
  10. Oversees and coaches the patient navigation positions to ensure patients are given the best customer service.
  11. Builds relationships with relevant professional and patient organizations.


  • Master’s Degree in a health or education related field
  • Ten years of experience in developing, designing, and implementing health related programs, or a mix of education/experience relevant to this position
  • Excellent planning, strategic thinking, decision-making, and problem-solving skills
  • Experience in product/program development including developing program evaluation and metrics
  • Excellent content development, writing, and editing skills
  • Ability to work with and represent the organization across a wide spectrum of patients, families, health professionals, business, and corporate representatives
  • Management with responsibility for a department, contributing to cross-functional efforts and demonstrated ability to collaborate and function as a member of the leadership team
  • Excellent interpersonal and team building skill; proven experience leading, motivating and inspiring others

Salary is commensurate with experience and includes a comprehensive benefit package including fully paid health insurance and 403b plan. The position is fulltime, but with some flexible work options.  

To apply, send cover letter and resume to Kathleen Weis, CEO,