Patient and Clinician Outreach Coordinator
The RUNX1 Research Program (runx1.com) is a nonprofit committed to finding a cure for RUNX1-FPD, a hereditary blood disorder that predisposes to leukemia. Since inception in 2016, the two founder-directors have funded over $4 million in cutting-edge leukemia research, gathering the most prominent leukemic researchers in the world together to direct their focus to our cause. We are seeking a highly skilled and organized Patient and Clinician Outreach Coordinator with exceptional communication skills to join our team.
The Patient and Clinician Outreach Coordinator will source and engage RUNX1-FPD stakeholders to our Program, ultimately allowing us to both increase the visibility of the disorder, and to advocate for a greater number and reach of affected patients. Stakeholders include hematology and oncology clinicians, genetic counselors and individuals possessing the germline RUNX1 mutation. The goal is to be seen and known as a trustworthy source of information and resources about the disorder. In addition to the education component, intrinsic in this relationship-building process is to better understand patient concerns in order to advocate and lobby effectively. The ultimate objective of our patient-outreach program is to educate and engage with every RUNX1-FPD family worldwide. An educated patient and physician community is integral to our goal of finding a therapeutic cure for this rare disorder.
We have worked closely with the National Institutes of Health (NIH) and the National Cancer Institute (NCI) in developing and implementing an upcoming RUNX1-FPD Study. The Study and Clinic will be a first-of-its kind, pre-cancer, longitudinal study of cancer progression on a molecular basis: from the germline mutation to frank leukemia. Pre-leukemic patients will be monitored at no cost to them at the Bethesda, MD, headquarters, and through local centers. The patient data generated will be a resource to the entire RUNX1-FPD field, facilitating research into pre-leukemic therapeutic interventions. The RUNX1 Research Program and the Patient and Clinician Outreach Coordinator will assist the NIH/NCI in encouraging affected individuals worldwide to participate in this groundbreaking Study and Clinic which also, extraordinarily, promises cutting-edge leukemia treatment and care should a patient’s condition evolve into cancer.
The Patient and Clinician Outreach Coordinator, in liaison with our marketing support systems and staff, will be responsible for multimedia-content creation used for outreach education purposes. The role will involve significant travel to visit key cancer centers and to hold workshops at important conferences in the relevant medical areas. In addition, the ideal person will be expected to have excellent oral and written communication skills, whether to a large audience of medical professionals or one-on-one to an affected patient. The Patient and Outreach Coordinator will report to the Executive Director of the RUNX1 Research Program.
● Create, develop and maintain a database of RUNX1-FPD stakeholders.
● Outreach to physicians globally to establish the RUNX1 Research Program as a trustworthy
and reliable source of information regarding RUNX1-FPD.
● Outreach to physicians and hematologists globally to increase the visibility of the disorder,
and, therefore, to increase awareness and diagnosis figures.
● Source, connect with and foster relationships with physicians managing current and
potential RUNX1-FPD patients, as well as actual RUNX1-FPD patients and their families worldwide. This will include patients that may be interested in participating the NIH/NCI Study and Clinic.
● Develop educational content in collaboration with the Executive Director and RRP Scientific Advisers for the benefit of physicians, patients and their family members.
● Liaise and work with our marketing support systems to refine and maintain a constant and effective social media presence, engaging and responding to external inquiries on such platforms as facebook, RareConnect, etc.
● Respond directly, and in a timely manner, to questions from patients and family members via email, phone, video conference, and from other online forums.
● Participate in, and develop educational and outreach content, for workshops and presentations at relevant medical conferences.
● Create a Patient Advisory Board made up of 5 - 6 high-level volunteers composed of patients, caregivers, and/or family members in order to provide patient-centered guidance to the RRP.
● Develop and conduct patient surveys and focus groups to refine our educational strategy.
● Knowledge of healthcare, medical and/or oncology environment.
● Strong problem-solving, priority-setting, and decision-making skills; looks beyond the
obvious and doesn’t stop at the first answers.
● Ability to manage multiple projects; to move projects forward in a timely fashion while
working in a rapid-paced environment.
● Budget, business analysis and vendor management experience desired.
● High degree of organizational and analytical skills; attention to detail.
● Strong communication skills, both oral and written.
● Ability to work independently or collaboratively within a cross-functional team.
● Demonstrated staff management and development capabilities.
● Excellent computer skills in Microsoft Office, including Word, Excel, and PowerPoint.
Education and Experience Requirements:
● Bachelor’s degree required, Master’s degree an asset.
● Minimum of five (5) years’ relevant experience.
To apply, please email your resume and cover letter answering the below questions:
1. What are the top 2 reasons you believe you are right for this position?
2. How would you approach your first 30 days in this position?