Scientific Program Associate

(CSNK2A1 Foundation – Remote with limited travel)

The CSNK2A1 Foundation is a patient-centered 501(c)(3) nonprofit organization focused on funding innovative, high-reward research with the potential to transform the lives of individuals with Okur-Chung Neurodevelopmental Syndrome (OCNDS) . Founded in 2018, the Foundation is building a patient-led research ecosystem where OCNDS families and researchers collaborate to identify relevant clinical questions, advance translational science, and accelerate progress toward effective treatments.

In just a few years, we have:

• Catalyzed 15 laboratories around the world
• Awarded 14 research grants
• Built a global network of more than 100 researchers
• Identified seven existing FDA-approved drugs now being tested in animal models
• Grown from six known patients to more than 370
• Expanded from one scientific publication to over 40
• Invested over one million dollars directly into science

We are equally committed to cultivating the next generation of rare disease researchers through our active internship program ( learn more here ), which offers opportunities for students and early-career scientists to engage in translational research, data analysis, and patient-centered projects alongside our global collaborators.

Reporting to the Chief Scientific Officer, the Scientific Program Associate supports the implementation of the Foundation’s scientific initiatives and programs. The Associate collaborates with academic investigators, biotech and pharma partners, patient advocacy organizations, and funding agencies to help advance the Foundation’s research goals. This role assists in coordinating ongoing projects, managing data and deliverables, preparing scientific materials, and facilitating communication among stakeholders.

The Associate contributes to strengthening the CSNK2A1/OCNDS research network, fostering innovation, and ensuring that Foundation resources are effectively aligned toward the shared goal of improving outcomes and accelerating treatments for individuals living with OCNDS.

The Scientific Program Associate will work closely with the Chief Scientific Officer to manage and coordinate ongoing scientific initiatives and partnerships across our global research network. This entry-level professional position is ideal for a recent PhD graduate or a candidate with a master’s degree and 2+ years of relevant experience seeking to contribute to rare disease research, translational science, and patient-centered research infrastructure within a fast-growing nonprofit.

This is a part-time (20 hours/week) contract position with an anticipated start date of March 2026 . The role offers the opportunity to gain broad exposure to preclinical and clinical research strategy, grant and project management, and stakeholder engagement, with the potential to grow into a full-time position in the future.

• Support implementation of the Foundation’s scientific strategy, research roadmap, and collaborative initiatives under the guidance of the Chief Scientific Officer.
• Assist in project tracking and coordination , including documentation of milestones, deliverables, decisions, and progress across multiple academic and industry collaborations.
• Contribute to grant and proposal preparation , including literature review, drafting and editing scientific sections, and administrative components (e.g., compiling biosketches and supporting materials).
• Coordinate communications with external collaborators, ensuring timely follow-up and alignment across ongoing research projects, including recruitment support, clinician outreach, and coordination with platforms.
• Assist in organizing scientific meetings and round tables , including virtual and in-person convenings.
• Conduct landscape and literature reviews and support translation of research updates for dissemination to the broader community (website, newsletters, social media, research summaries, etc.).
• Support research operations and infrastructure activities , including maintaining organized records of projects, funding opportunities, contacts, and study documentation, and assisting with review boards and data or material use agreements under guidance.
• Assist with data analysis, figure preparation, and manuscript development to support scientific publications and presentations.
• Participate in cross-team activities to ensure coordination between research, community engagement, and…