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Current Job Openings at Member Organizations

NORD’s membership is comprised of a diverse array of patient organizations. Currently we have 340 members who together represent hundreds of diseases. NORD supports these member organizations in a multitude of ways, including listing their job openings on our website. Please see below for current job openings from our member organizations.

Adrenal Insufficiency United

Adrenal Insufficiency United is hiring a part-time Operations Coordinator.

Important Requirements you must meet all 3 of those listed below to be eligible for this position:
*Since AIU has its business registration based in Oregon this position is limited to those who reside and file their taxes in the state of Oregon.
*Time Commitment ~10 hours/week with more possible during our conference planning stages.
*In order to work with individuals across several time zones, the Operations Coordinator will have some virtual meeting hours between 9 a.m. – 2 p.m. PT.

Role Summary:
The Operations Coordinator supports the Executive Director by managing day-to-day administrative tasks, coordinating volunteers, and ensuring smooth execution of AIU programs and events.

For more information please email contact@aiunited.org. To apply, https://form.jotform.com/AIUnited/operations-co
CCHS Network, Inc Congenital Central Hypoventilation Syndrome

Position: Executive Director

Status: Full Time (40 hours/week); Exempt

Reports To: President, Board of Directors

SALARY: $100,000 with opportunity for growth based on successful fundraising campaign results. Benefits offered.

TO APPLY:

Visit their website to view complete Job Listing and requirements: http://cchsnetwork.org. To apply, submit a resume and cover letter electronically to [email protected] with “ED Application_Your Name” in the email’s subject line. In your cover letter please include examples of fundraising with revenue results, management, nonprofit, advocacy, and virtual work experiences. Resumes without a cover letter will not be reviewed.

Cure ARS Seeking Members for Scientific Advisory Board

Cure ARS is actively seeking qualified experts to join their Scientific Advisory Board (SAB). Their mission is to spread awareness, connect and provide support to affected families and fund research for the ultra-rare Mitochondrial Aminoacyl t-RNA Synthetase (mtARS) genes in order to pave the way to suitable treatment options and ultimately a cure.

The SAB will play a key role in guiding Cure ARS’s research strategy, scientific priorities, and educational initiatives. Email: [email protected] with inquiries.

CCHS Network | Executive Director
Position: Executive Director (Full-Time, Exempt)
Reports to: President, Board of Directors

The CCHS Network, Inc. is a 501(c)(3) organization founded in 1989 to raise awareness of Congenital Central Hypoventilation Syndrome (CCHS). CCHS is a rare complex genetic disorder, usually diagnosed at birth, which affects the automatic nervous system’s ability to automatically and spontaneously breathe during sleep, along with many other multi-system complications. To learn more about the organization, please visit www.cchsnetwork.org

The CCHS Network seeks a dynamic Executive Director to provide strategic leadership, drive organizational growth, and strengthen community and partner engagement. This role oversees program development, operational effectiveness, fundraising, and financial sustainability. Ideal candidates will have experience in nonprofit leadership, advocacy, virtual team management, and demonstrated fundraising success.

To Apply:

Submit a resume and cover letter to [email protected] with the subject line: “ED Application_Your Name.” Your cover letter should include examples of your fundraising success (with revenue results), management experience, nonprofit and advocacy work, and virtual work history. Applications without a cover letter will not be reviewed.

SALARY RANGE: $70,000-75,000 with opportunity for growth based on successful fundraising campaign results. Benefits offered.

SATB2 Gene foundation Director of Development (Part-Time)

The SATB2 Gene foundation is seeking a creative, strategic, and relationship oriented Director of Development (Part-Time) to lead and expand our fundraising efforts. This role will be responsible for creating and executing a comprehensive fundraising strategy. This includes online and in-person fundraising efforts across individual giving, sponsorships, grants and events. A focus of the role will be supporting families in organizing local events and developing a signature, adaptable event model that can easily be replicated by families in their own communities.

The ideal candidate will bring experience from the non-profit sector – including a proven fundraising record, event planning, project management, community outreach, and donor engagement – and will be passionate about helping individuals make a real impact in the rare disease space.

Interested applicants should apply by June 20, 2025. Details on application process can be found on the linked job description: https://satb2gene.org/news/we-are-hiring/ 

The Phelan-McDermid Syndrome Foundation is seeking a visionary and mission-driven Chief Executive Officer to lead with purpose, ignite innovation, and provide strategic direction to support individuals and families affected by Phelan-McDermid syndrome and accelerate the path toward a cure.

The CEO will oversee all aspects of the foundation’s operations, including fundraising, program development, community engagement, building partnerships with scientific and medical communities to support research, and patient advocacy. They will play a pivotal role in advancing the foundation’s mission to improve the quality of life for individuals affected by Phelan-McDermid Syndrome.

The search is being managed on the Foundation’s behalf by Development Guild. To apply, please visit: https://www.developmentguild.com/current-searches/chief-executive-officer-phelan-mcdermid-syndrome-foundation/