Congenital Hyperinsulinism International


Congenital Hyperinsulinism International (CHI) is hiring. We are seeking a CHI Research Program Manager. This is a great opportunity to work to improve the lives of people living with a rare disease and to join the CHI team.  You can read more about this position and how to apply for it below.

If you are interested in applying, please send your cover letter and resume to by December 23 and put “CHI Research Program Manager Position” in the subject line. We will carefully consider your application during the initial screening and will contact you if you are selected to continue in the recruitment process. Thank you so much for your interest in this position.

Current Job Listing:

CHI Research Program Manager

Nonprofit Overview: Congenital Hyperinsulinism International (CHI) is a leading organization dedicated to improving the lives of children with congenital hyperinsulinism (HI). HI is a life-threatening disorder that causes dangerously low blood sugar levels due to the over-production of insulin. Prolonged or severe low blood sugar can cause seizures, brain damage, and even death. CHI supports research towards better treatments and a cure, advocates for timely diagnosis and improved standards of care, and supports people living with HI every step of the way.

Position Summary: Joining the CHI team as the CHI Research Manager is an amazing opportunity for the right person to bring their talents to these exciting and impactful projects in the rare disease space: the HI Global Registry, the Centers of Excellence Program, and the additional CHI research programs. The CHI approach is collaborative and solutions oriented. The CHI Research Program Manager will work together with CHI staff and volunteer committee members to manage all aspects of these programs.

Location: The Research Program Manager works at the CHI Office at 117 Watchung Avenue, Rear, Montclair, NJ or remotely from home with limited travel.

The primary goals of the CHI Research Manager are to:

  • Support preclinical and clinical congenital hyperinsulinism research to increase knowledge of the condition leading to better treatments and cures.
  • Bring innovation and high-quality execution to existing CHI research programs, including the HI Global Registry, Million Dollar Bike Ride, HIHA Research Grant, Exeter Genetic Testing, and the CHI Centers of Excellence program.
  • Identify grant and other funding opportunities to ensure sustainability and necessary growth to current and future research programs.



  • Serve as primary contact with survey participants, scientific researchers, the medical community, nonprofit and hospital staff, and Institutional Review Board
  • Work with HIGR Investigators on data curation and reporting
  • Engage the CHI community to ensure maximum patient participation in HIGR
  • Work with the platform vendor on ongoing functional and technical enhancements and maintenance
  • Work with CHI staff on HIGR fundraising
  • Additional assignments, as needed


  • Support all aspects of the Million Dollar Bike Ride Program
  • Administer HIHA Research grant
  • Facilitate Exeter Genetic Testing Program
  • Identify grants and apply for funding for CHI research
  • Participate in developing and managing future in-house CHI research grant programs
  • Create and manage research material on website
  • Write about CHI research programs
  • Manage CHI research grant reporting
  • Work with CHI staff on research collaboration with biotechs and clinical trial support
  • Present on HIGR and CHI Research Program at conferences and meetings
  • Additional assignments, as needed


  • Manage CoE Committee communications
  • Finalize CoE Materials
  • Work with Webmaster on CoE content including application portal and “Newly Diagnosed” section
  • Organize meetings to finalize program documents, selection and award process
  • Work with CHI Communications Team to launch online awareness campaign
  • Manage application process
  • Manage ongoing evaluation process of COE program
  • Manage CoE grant reporting
  • Additional assignments, as needed


The ideal candidate is an excellent communicator who has worked successfully on data projects and is familiar with the work of patient support organizations, academic medical centers, and biopharmaceutical companies. The ideal candidate enjoys working with a team and is very self-motivated.

  • BA, BS, or BSN required
  • Understanding of clinical trials, patient registries and related experience
  • Ability to work closely with information technology specialists
  • Experience and ability to work on data projects
  • Excellent verbal and written communication skills and quantitative skills
  • Ability to adapt to a dynamic work environment
  • Ability to work independently with minimal supervision and to work in a group
  • Excellent Excel, Microsoft Word, PowerPoint, and Outlook skills
  • Experience with social media postings on sites like Facebook, Twitter, Instagram, and LinkedIn

Preferred qualifications:

  • Advanced degree (MA, MS, MPH, MSN, CNP)
  • Experience managing a patient registry
  • Knowledge of medical terminology to oversee verification of patient‐entered data and/or submitted test results
  • Grant writing experience

If the above job description and requirements are a good match with your interests and qualifications and you are interested in the position, please send a cover letter and resume to CHI is an equal opportunity Employer.

Click here to download a PDF of this job listing.

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