Position: Scientific & Patient Outreach Coordinator
Employer: The DDX3X Foundation
Classification: Professional, full-time, remote
A unique opportunity for a highly motivated scientific-minded professional to contribute to a small and dedicated non-profit, patient advocacy organization to accelerate research for the rare disease DDX3X Syndrome. The primary focus of this position is to coordinate all research and science functions within the Foundation with an emphasis on work related to the patient registry, Centers of Excellence, and natural history studies. A strong scientific background and experience with patient registries are required.
- Build, implement, and manage the DDX3X Foundation patient registry
- Oversee development of Centers of Excellence and natural history studies
- Work with DDX3X Foundation Executive Director and Board of Directors to establish research roadmap including goals, timelines, and budgets
- Provide administrative oversight for grant activities; manage contract negotiation, work with grant recipients to track and manage study timelines; ensure compliance with project goals, budget, and deliverables.
- Liaise with clinicians, researchers, Scientific Advisory Board members, and other scientific stakeholders on behalf of the Foundation
- Knowledgeably and professionally represent the research interests of the DDX3X Foundation in meetings with researchers, clinicians, pharmaceutical companies, advisors, patient advocacy groups, and related stakeholders
- Track and update DDX3X patient statistics
- Prepare scientific updates for Foundation communication materials
- Provide administrative support for planning quarterly research meetings
- Develop scientific programming and content for annual scientific meetings
- Clean and curate data from the patient registry and surveys
- Communicate with patient community to promote the registry and enrollment
- Understand and translate into layman’s terms recent publications
- Track and catalog all papers on DDX3X Syndrome
Qualifications of an Ideal Candidate:
Key qualities include project management experience, strong organizational and database skills, and demonstrated written and oral communication skills. Equally important is the ability to work proactively to ensure timely completion of projects.
- Bachelor’s degree or higher with 2+ years of relevant experience
- Ph.D. preferred
- Experience with patient registries is required
- Experience in project management, grant administration, clinical research, biological sciences, and/or database management
- Project management skills – must be very organized, detail-oriented, and capable of managing multiple moving parts
- Ability to accomplish challenging objectives in a timely manner
- Strong interpersonal skills
- Flexibility in approach and willingness to adapt when necessary
- Excellent verbal and written communication skills
- Ability to work collaboratively
- Self-motivated problem solver
About The DDX3X Foundation:
The DDX3X Foundation is an international nonprofit organization founded in 2015 to aid in the process of finding a treatment or a cure for DDX3X Syndrome. As part of our mission, the foundation will support existing research, education, and treatment programs focused on DDX3X Syndrome. The foundation has three primary functions: support research, connect families, and raise awareness.
How to Apply:
Interested candidates should send a resume and cover letter describing their specific qualifications and interest in the position to [email protected]. Please include expected salary range. Submissions without a cover letter will not be considered.