The Aplastic Anemia Aplastic Anemia: (ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most… & MDS International Foundation is the world's leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndromes myelodysplastic syndromes: (my-eh-lo-diss-PLASS-tik SIN-dromez) A group of disorders where the bone marrow does not work well, and the bone marrow cells fail to make enough healthy blood cells. Myelo refers to the bone marrow. Dysplastic means abnormal growth or development. People with MDS have low blood cell count for at… (MDS), paroxysmal nocturnal hemoglobinuria paroxysmal nocturnal hemoglobinuria: (par-uk-SIZ-muhl nok-TURN-uhl hee-muh-gloe-buh-NYOOR-ee-uh) A rare and serious blood disease that causes red blood cells to break apart. Paroxysmal means sudden and irregular. Nocturnal means at night. Hemoglobinuria means hemoglobin in the urine. Hemoglobin is the red part of red blood cells. A… (PNH), and related bone marrow failure bone marrow failure: A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any time in life) or can be… 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
MAJOR RESPONSIBILITIES:
- 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.
- Directs the design, implementation, and evaluation of services for patients, families, and caregivers.
- 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.
- 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.
- Standardizes programming across diseases, within a variety of models, to ease implementation, while supporting customization for audience. Scales in a way that ease replication.
- Directs the online and in-person learning events for patients and families including overseeing content development and presenter selection.
- 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.
- Contributes to the Foundation’s communications calendar for print and electronic messaging.
- Assists in preparation of funding proposals to corporate sponsors.
- Oversees and coaches the patient navigation positions to ensure patients are given the best customer service.
- Builds relationships with relevant professional and patient organizations.
SPECIFIC SKILLS AND REQUIREMENTS:
- 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, weis@aamds.org