Congenital Hyperinsulinism International


CHI is growing! We are seeking two key team members – a Registry Manager and a Development Manager.

Please send a resume and cover letter for either position to by July 15, 2023.

Registry Manager

Nonprofit Overview: Congenital Hyperinsulinism International (CHI) is a health non-profit dedicated to improving the lives of children with a rare disease, 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. Despite being a rare disease, CHI has created a vibrant and active community of researchers, clinicians, and patient and caregiver advocates who work together to solve the most pressing issues for individuals living with HI worldwide. CHI is dedicated to family support, awareness, and research toward better treatments and a cure.

Position Summary: Joining the CHI team as the Registry Manager is a great opportunity to participate in exciting and impactful research and engagement projects in the rare disease space. This new position is a full-time remote work opportunity. The Registry Manager will work with CHI staff to support and grow the HI Global Registry (HIGR). HIGR launched in 2018 as an online registry to collect information from patients and caregivers related to their experience living with HI across a lifetime. The registry has now expanded to include physician-reported and real-world data streams to provide an even more robust picture of the HI experience. HIGR data has been used in peer-reviewed publications and presented at international medical conferences. The Registry Manager will be responsible for HIGR recruitment, developing ongoing engagement strategies, communicating with respondents, verifying respondent survey answers, participating in data analysis projects, helping implement and maintain patient and physician incentivization programs, and supporting data partnerships. The Registry Manager will report to the Chief Research Officer.

Location: The Registry Manager will work remotely from home with occasional travel. Preference will be given to individuals in Northern NJ, NYC, Western MA, and the DC Metro area, but applicants from all geographic locations will be considered.

Position Description:

  • Communicate with HIGR respondents to encourage ongoing participation and provide related support resources.
  • Complete ongoing data validation, including contacting survey respondents to update or clarify submitted survey responses.
  • Complete the NIH Human Subjects Research training to learn about ethical research best practices.
  • Collaborate with CHI staff and other stakeholders to develop effective ways to communicate the importance of participating in HIGR.
  • Work closely with members of the CHI communications team to support engagement and recruitment for HIGR utilizing best practices for registry recruitment.
  • Track and manage incentivization programs for HIGR participants.
  • Assist in the scheduling and support of HIGR Steering Committee meetings.
  • Contribute to data analysis and research projects using HIGR data to support the collaborative research network, conference presentations, data reports, and publications.
  • Participate in conversations related to observations in data trends and, in time, provide meaningful input on potential future directions for research.
  • Represent CHI and HIGR at medical conferences and family events.
  • Help the CHI staff execute major events, including conferences (virtual and in-person) and the Sugar Soirée.
  • Assist ongoing advocacy and awareness projects to increase public awareness for CHI.
  • Support other projects and initiatives as needed based on CHI priorities.


  • A bachelor’s or bachelor’s and master’s degree in public health, communications, public affairs, psychology, social work, policy, genetics, health sciences, statistics, or another relevant degree and/or experience.
  • Familiarity with congenital hyperinsulinism or the rare disease patient experience.
  • A strong interest in rare diseases, research, genetics, medicine, or advocacy.
  • Ability to work collaboratively with individuals in a remote work environment.
  • Capacity to adapt to a dynamic work environment.
  • Strong self-guided work habits and ability to track multiple simultaneous projects.
  • Excellent knowledge of Excel, Microsoft Word, and PowerPoint.
  • Familiarity with reading and interpreting academic research papers and methods.
  • Familiarity with data software programs such as Stata or R is encouraged.
  • Strong verbal and written communication skills.
  • A positive attitude and enthusiasm for learning new skills, terminology, and concepts.

CHI is an Equal Opportunity Employer. We respect and seek to empower each individual and support the diverse cultures, perspectives, skills and experiences within our workforce.

Development Manager

Nonprofit Overview: Congenital Hyperinsulinism International (CHI) is the 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 helps people living with HI.

Position Title: Development Manager

Position Reports to: Chief Executive Officer

Affiliations: CHI Staff, Board Members, Consultants, Representative Patients and Patient Families, CHI Community Volunteers and Others at the Direction of the CEO.

The Development Manager will work to support the mission, vision and priority goals of Congenital Hyperinsulinism International (CHI) by honing, implementing, and stewarding the organization’s fundraising initiatives to secure funding for the organization’s work.

The position is a full-time or regular part-time position requiring a suitable home office equipped with proper equipment and technology for virtual work and online meetings. The position also involves some travel to domestic and international locations for meetings and conferences to meet with senior staff as well as travel to meet current and prospective donors.

Specifically, the Director of Development will:


  • Participate in onboard sessions and take personal initiative to learn the science of HI at a layperson’s level, as well as current program and fundraising plans, and CHI operating systems.


  • Implement the fundraising plan/fundraising initiative created by the CEO and her senior staff and consultants in 2022.
  • Continually update all fundraising plans for alignment to organizational shifts and weekly and monthly goals, as determined by the CEO.
  • Work with the full CHI team to build, expand and improve public relations and promotional plans and platforms to increase awareness of CHI’s work and opportunities to improve lives of people with HI. Such plans should reach all stakeholders and constituents including but not limited to patients, families, researchers & scientists, medical professionals, hospitals, donors and anyone poised to advance the CHI mission.

Donor Research:

  • Conduct ongoing research on current and prospective donors (individuals, foundations, corporations and other organizations) with an end goal to acquire major gifts from new donors, and to renew and upgrade gifts from current donors.
  • Continuously updating contact information on both new and existing donors.
  • Lead processes to identify new donors to the organization through current and newly established networks. Coordinate the full CHI team to galvanize the collective network.
  • Reach out personally to leaders in targeted networks and with current donors and others to assist in identification and development of new donors.
  • Take initiative to make “cold calls” to prospective donors (foundations, corporations, individuals) who might not yet have awareness of or a relationship with CHI.

Board Development:

  • Lead strategic research to support the CEO, the COO and the board to help with ongoing major gift development and strategic awareness programs on an international basis.

Foundation and Government Relations:

  • Determine the best foundation partners and design all processes to help close commitments, from preparing letters of inquiry (LOIs) to formal proposals and ongoing personal interactions with foundation leaders and their board members.
  • Assist the CEO in identifying any appropriate government grants that accelerate the CHI mission.
  • Prepare relevant materials for foundation proposals and or government grants and coordinate input from experts, i.e. Scientists, researchers, partners etc.
  • Track results from proposals and grants received and send grantors regular impact reports and communication to keep them engaged and supportive.

Donor Cultivation and Solicitation:

  • Work collaboratively with the CEO and board members to cultivate donors and prospective donors in a manner which is highly personal and relevant to each donor.
  • Conduct face-to-face and/or phone and online communication with such donors on a regular basis.
  • Help create and continuously refine “board portfolios” with assigned donors, then track and manage actions needed from the CEO, each board member and any other appropriate staff and volunteers to ensure their success in their personal management of their portfolios—supply them with all needed materials and instructions to be effective.
  • Position the CEO, key staff, and board members for effective interactions with donors.
  • Seek and secure opportunities to get the CEO, key staff, and board members in front of leaders in critical donor networks.
  • Write correspondence to donors as needed between interactions with the team.
  • Manage a system for completion of donor contact reports for all critical cultivation and solicitation calls and integrate into the CRM system.
  • Prepare personal proposals for specific asks to individual donors.

Tracking, Reporting and Database Management:

  • Maintain a PMR (Prospect Management Report), tracking all actions with prospective and current donors on a weekly basis and update in shared drives.
  • Track and manage all actions assigned to the full team.
  • Help maintain the donor database and all records in co-ordination with the COO.

Donor Stewardship:

  • Assist the full CHI team in designing and implementing creative ways to keep donors informed of the results and impact of their giving through personal and collective donor acknowledgement activities.
  • Oversee all donors are properly thanked and acknowledged in a timely manner.

Planned Giving:

Help the CEO and CHI Senior Staff to design and incrementally build a planned giving program, including:

  • Designing a brochure for constituents describing the most relevant planned gift options.
  • Arranging a relationship with a financial institution to manage Charitable Gift Annuities.
  • Reviewing and suggesting and needed updates to current Gift Acceptance and Gift Crediting Policies for Board Approval.
  • Informing donors about planned giving vehicles.
  • At the appropriate time, start a Legacy Society for those who have put CHI in their Wills or Estate Plans.

Fundraising/visibility Events:

  • Assist the full team with the design, relevance, management and implementation of all special events, small and large to build awareness and or raise money for CHI.
  • Ensure that such events properly engage and recognize all donors and CHI stakeholders and advance relationships with each other in addition to the organization’s leadership.

Relationship with CHI Families and Related Constituents:

  • Help support the CEO and COO with all processes to reach CHI Families and constituents.
  • Provide CHI families with practical and creative ways to utilize such platforms with their personal networks.
  • Utilize and suggest tools to assist with the above.
  • Liaise with other stakeholders, such as extended family members– and friends/colleagues of CHI family members etc. to instigate new and creative ways for them to direct funds toward CHI.

Participation in Meetings:

  • Interact regularly online with the CEO and senior CHI team.
  • Attend CHI staff meetings when necessary.
  • Participate in board meetings and staff retreats both in person and online as directed by the CEO.
  • Schedule and participate in donor cultivation and solicitation meetings in person and online.

Ongoing Education:

  • Attend any relevant training and or coaching sessions at the request of the CEO.
  • Participate in research conferences at the request of the CEO.
  • Take initiative to interact with any organizational consultants in fundraising and or public relations.


  • From time-to-time there will be other responsibilities required to assist in all aspects of fundraising, relationship development and organizational promotion.



  • Has worked in a lead development position in nonprofit sector with a focus on major gifts for at least 5 to 7 years.
  • Has been effective in motivating and supporting a board of trustees in partnership with the organization’s CEO/ED.
  • In addition to major gifts, has either provided oversite to or directly managed all areas of development including foundation and corporate relations, individual giving at all levels, donor research, constituent management, events and public relations to support fundraising.
  • Has personally helped to close gifts at the $10K level and higher.
  • Has personally identified new individual donors to an organization via new networks.
  • Track record of initiating “first approach” calls to new foundations, corporations and/or individual donors.
  • Proven track record for cultivating and advancing relationships with existing donors.


  • Superior interpersonal skills.
  • Ability to sell the organization’s vision with passion.
  • Persuasive written and oral communication skills.
  • Strong project management and organizational skills.

Personal Qualities and Attributes:

  • Self-starter/leader
  • Team Player
  • Ability to work in an entrepreneurial environment with a small team needing to work many hours during certain work cycles and donor events.
  • Takes initiative in bringing ideas for finding and cultivating new donors.
  • Not afraid to make cold calls and form relationships by phone, Zoom and other tools which connect people across geographic areas.
  • Takes personal responsibility/accountability for work and meets deadlines.
  • Ability to work independently (virtually) without supervision.

CHI is an Equal Opportunity Employer. We respect and seek to empower each individual and support the diverse cultures, perspectives, skills and experiences within our workforce.