Job description

About the MDS Foundation

The Myelodysplastic Syndromes (MDS) Foundation is a leading global nonprofit committed to enhancing the quality of life for patients and families affected by MDS through comprehensive patient support, education, research, advocacy, and strategic partnerships. The Foundation serves as a trusted resource for a wide range of stakeholders including patients, caregivers, healthcare professionals, researchers, and industry collaborators worldwide, working diligently to achieve improved outcomes and ultimately find cures.

Role Overview

The Director of Support and Education spearheads the Foundation’s patient support, caregiver engagement, and educational programs. Reporting to the Vice President of Partnerships and Programs, this role involves defining strategy, designing, implementing, and continuously enhancing educational and support initiatives that benefit patients, caregivers, and healthcare providers globally. Ensuring these programs are evidence-based and aligned with the Foundation’s mission and priorities is essential.

Key Responsibilities

Manage the patient and caregiver helpline to provide prompt, accurate, and empathetic responses to inquiries related to MDS.
Act as a clinical resource for patients, caregivers, and healthcare professionals offering guidance on MDS treatment options, clinical trials, and supportive care.
Facilitate referrals to specialized Centers of Excellence and clinical experts when appropriate.
Maintain high standards in patient communications and support services.
Engage with patient activity on the MDS Exchange, offering support and clinical insight as necessary.
Lead design and delivery of educational initiatives including webinars, forums, and conference education for patients, caregivers, and healthcare professionals.
Oversee logistics, timelines, budgets, vendors, and faculty to ensure quality education program execution.
Monitor and evaluate program success through attendance, engagement, and feedback metrics, reporting outcomes internally and externally.
Manage and update the Foundation’s educational resource library, ensuring it is scientifically accurate, accessible, and meets community needs.
Identify and fill gaps in educational materials and develop innovative content using new digital formats and technologies.
Serve as the Foundation’s clinical and disease authority on MDS, ensuring accuracy in all educational and support materials.
Stay informed on latest MDS research, treatments, and standards to translate complex data into patient-friendly information.
Collaborate with medical advisory bodies and external experts to shape programs and content.
Represent the Foundation at education programs, conferences, and community events as a trusted clinical and education expert.
Design and oversee patient, caregiver, and healthcare professional surveys and needs assessments to gather qualitative and quantitative insights.
Analyze data to detect trends, unmet needs, and disparities within the MDS community and share findings across the organization.
Collaborate with internal teams to incorporate patient insights into program planning and education strategy.
Support grant writing and partner communications by providing patient-centered insights.
Identify opportunities to leverage patient and community experiences to enhance research priorities, partnerships, and organizational strategies.

Qualifications & Experience

Bachelor’s degree required; advanced degrees in nursing, healthcare, public health, education, or related fields are strongly preferred.
Preferred clinical background in hematology, oncology, or related specialties; hematology nursing experience is highly valued.
Seven or more years working in patient care, advocacy, healthcare education, or similar roles.
Proven ability working directly with patients and caregivers, especially in complex or rare disease contexts.
Experience crafting educational programs or content for patients and/or healthcare providers.
Experience collaborating with pharmaceutical companies, medical advisory boards, or healthcare professionals is a plus.

Skills & Competencies

In-depth knowledge of patient-centered care and caregiver experiences.
Exceptional ability to convey complex medical information with clarity, accuracy, and empathy.
Strong presentation and facilitation capabilities for diverse audiences.
Experience conducting and analyzing surveys, needs assessments, or patient-reported outcomes is preferred.
Outstanding analytical and strategic thinking skills to translate insights into actionable plans.
Proficient project management and cross-team collaboration skills.
Exemplary professionalism, empathy, discretion, and alignment with the Foundation’s mission.
Comfortable and effective in a fast-paced remote work setting; familiarity with virtual education platforms is a benefit.

Compensation & Benefits

Competitive annual salary between 90000 and 125000 USD, depending on experience and location.
Comprehensive health insurance including medical, dental, and vision coverage.
401(k) retirement plan with employer matching.
Flexible paid time off policy designed to encourage adequate rest and recovery.
Generous holiday schedule with organizational closures during major holidays.
Flexible and remote work environment emphasizing outcomes and work-life balance.

Why Work Here

This position offers a rare chance to influence the future of care for individuals affected by MDS. As an integral part of the Partnerships and Programs team, you will elevate patient voices, expand cutting-edge education and support, and ensure that the lived experiences of patients and caregivers shape advocacy, partnerships, research, and organizational direction.