Job Posting: Director, Division of Rare Diseases Research Innovation (DRDRI)

Summary

The National Center for Advancing Translational Sciences (NCATS), a major research component of the National Institutes of Health (NIH) and the U.S. Department of Health and Human Services (HHS), seeks an outstanding scientific and executive leader to serve as Director of its Division of Rare Diseases Research Innovation (DRDRI) to build scalable translational solutions for rare diseases, move advanced diagnostics and therapies toward patients, and assemble the cross-sector partnerships necessary to make that possible. NCATS leads NIH efforts to transform the translational science process to accelerate the development of diagnostics and therapeutics for a wide range of diseases and conditions, including rare diseases.

DRDRI leads and coordinates major NIH and NCATS activities designed to accelerate progress in the diagnosis and treatment of rare diseases through scientific collaboration, data integration, innovative research approaches, and patient-centered translational science. The Division comprises multiple subordinate organizational components with distinct scientific and programmatic portfolios and has broad responsibilities spanning advanced therapeutics, gene-targeted therapies, newborn screening, innovative clinical trial approaches, rare disease data science and informatics, collaborative research, and research infrastructure.

DRDRI provides strategic leadership and oversight for major national rare diseases research programs and resources, including the Rare Diseases Clinical Research Network (RDCRN), Genetic and Rare Diseases Information Center (GARD), and Rare Diseases Registry Program (RaDaR). The RDCRN is a nationwide network of 21 active clinical research consortia and a Data Management and Coordinating Center studying nearly 300 rare diseases, with more than 36,000 patients enrolled since 2003 and more than 2,600 researchers collaborating with over 140 patient advocacy organizations. DRDRI also supports programs focused on rare disease clinical trial readiness, information and data resources, research conferences and methodology, development of investigators, and engagement of patient advocacy organizations in translational research.

Another major focus of the Division is advancing gene-targeted therapies for rare diseases, including gene therapy and genome editing, through innovative platform approaches designed to accelerate development across many diseases at a time. DRDRI provides scientific and strategic leadership for programs that address critical translational barriers in areas such as biomarker development, preclinical development through first-in-human clinical studies, manufacturing, delivery, regulatory science, and clinical translation, with an emphasis on developing generalizable approaches, tools, and standards that can be applied broadly across rare diseases. The Division also develops and leads complex public-private partnerships that bring together NIH, FDA, and other federal agencies, industry, academia, non-profit organizations, and patient communities to share expertise and resources and accelerate the development of therapies for diseases that may otherwise lack a viable commercial path.

Duties

The Director, DRDRI, is a key member of the NCATS senior leadership team and reports directly to the NCATS Director. The Director serves as a principal advisor to the NCATS Director and provides executive-level leadership and decision-making on scientific, clinical, programmatic, operational, and policy matters related to rare diseases across the translational science spectrum.

The position also carries significant NIH-wide responsibilities rooted in the Rare Diseases Act of 2002. Consistent with these statutory responsibilities, the Director serves as the principal advisor to the NIH Director on matters related to rare diseases and plays a leadership role in shaping NIH-wide rare diseases research strategy, priorities, coordination, and policy. The Director recommends a national research agenda for rare diseases and promotes coordination and cooperation among NIH Institutes and Centers and with other federal agencies and external organizations engaged in rare diseases research.

The Director provides scientific, executive, operational, and administrative leadership of DRDRI; oversees substantial budgetary resources, diverse and complex research portfolios, and a multidisciplinary workforce; and directs strategic resource allocation, program development, performance management, workforce planning, and operational priorities across the Division and its subordinate branches. The Director also provides executive oversight of grant-making, cooperative agreements, research infrastructure development, and other extramural scientific programs and mechanisms supporting the rare diseases research community.

The Director is expected to identify emerging scientific opportunities, research gaps, and barriers to progress in rare diseases and develop strategies, partnerships, programs, and resources to address them. The Director leads and facilitates collaborations across NCATS and NIH Institutes and Centers and catalyzes interactions among government, academia, industry, researchers, clinicians, patient advocacy organizations, and other stakeholders to accelerate the translation of scientific discoveries into diagnostics, interventions, and treatments.

The Director represents NCATS and NIH in high-visibility national and international scientific, policy, and public forums and serves as a senior spokesperson and recognized leader for NIH rare diseases research. The Director maintains executive-level engagement with Congress, other federal agencies, academic institutions, industry partners, patient advocacy organizations, and national and international health and scientific organizations.

The successful candidate will foster an innovative, collaborative, multidisciplinary, and patient-centered environment that brings together diverse expertise and perspectives to address complex challenges in rare diseases research. The Director will promote scientific innovation, collaboration, accountability, effective stewardship of federal resources, and excellence in advancing the NIH and NCATS rare diseases research mission.

Information about NCATS is available at: https://ncats.nih.gov/

Who Can Apply

Qualifications

Required Qualifications

Applicants must possess an M.D., hold a current, valid medical license, have experience in a clinical discipline relevant to the position, and have an established record of outstanding scientific accomplishment and leadership appropriate to the scope and responsibilities of this executive-level position.

The successful candidate should possess demonstrated scientific and executive leadership experience in areas relevant to rare diseases research and/or translational science and the ability to provide strategic leadership for complex, multidisciplinary scientific programs. The candidate should have demonstrated experience leading scientific programs, organizations, or research portfolios of significant scope and complexity; managing scientific, human, and financial resources; and developing productive collaborations across organizational and disciplinary boundaries.

The successful candidate should also demonstrate the ability to engage effectively with senior scientific and government leaders and with a broad range of external stakeholders, including academic institutions, industry, patient advocacy organizations, professional and scientific organizations, and other federal agencies. Exceptional communication skills and demonstrated ability to articulate scientific priorities and represent complex scientific programs to diverse audiences are essential.

This position is designated as a Scientific Executive (SE) under applicable Title 42 authority. Applicants must be U.S. citizens, legal permanent residents, or non-U.S. citizens with valid work authorization.

Benefits

The Scientific Executive (SE) will be appointed at a salary commensurate with their qualifications and experience. A recruitment or relocation bonus may be available, and relocation expenses may be paid. Full Federal benefits, including leave, health and life insurance, retirement, and savings plan (401K equivalent) will be provided.

Please read the following guidance on Selective Service requirements.

Equal Employment Opportunity

The United States Government does not discriminate in employment based on race, color, religion, sex (including pregnancy), national origin, political affiliation, marital status, disability, genetic information, age, membership in an employee organization, retaliation, parental status, military service, or other non-merit factor. Equal Employment Opportunity (EEO) for federal employees & job applicants.

Standards of Conduct/Financial Disclosure

The National Institutes of Health inspires public confidence in our science by maintaining high ethical principles. NIH employees are subject to Federal government-wide regulations and statutes as well as agency-specific regulations described at NIH Ethics Website. We encourage you to review this information. The position is subject to a background investigation and requires the incumbent to complete a public financial disclosure report prior to the effective date of the appointment.

Foreign Education

Applicants who have completed part or all of their education outside of the U.S. must have their foreign education evaluated by an accredited organization to ensure that the foreign education is equivalent to education received in accredited educational institutions in the U.S. We will only accept the completed foreign education evaluation. For more information on Foreign Education verification, visit the National Association of Credential Evaluation Services (NACES) website. Verification must be received prior to the effective date of the appointment.

ADDITIONAL INFORMATION: HHS has a critical preparedness and response mission: HHS protects the American people from health threats, researches emerging diseases, and mobilizes public health programs with domestic and international partners. In support of this mission, HHS offers its employees the opportunity to volunteer to become Federal Civilian Detailees and contribute their unique skills through voluntary temporary assignments to humanitarian emergencies or Departmental priorities countering new and emerging health, safety, and security threats.

Reasonable Accommodation

You can request reasonable accommodation at any time during the application or hiring process or while on the job. Requests are considered on a case-by-case basis.

How to Apply

Interested candidates should submit the following materials:

1. A cover letter describing their interest in the position and qualifications for leading DRDRI.
2. A curriculum vitae or résumé, including a bibliography, as applicable.
3. A statement describing their scientific vision and leadership approach for advancing rare diseases research and translational science.
4. A copy of their medical degree and documentation of their current, valid medical license.

Submit application materials to [email protected]

For questions or additional information, contact Rebekah E. Geiger, Executive Officer, NCATS, at [email protected]

DO NOT INCLUDE YOUR BIRTH DATE OR SOCIAL SECURITY NUMBER (SSN) ON APPLICATION MATERIALS

APPLICATIONS MUST BE RECEIVED BY 11:59 P.M. ET ON OCTOBER 28, 2026.

HHS, NIH, AND NCATS ARE EQUAL OPPORTUNITY EMPLOYERS