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.
Foundation for Ichthyosis & Related Skin Types, Inc. – Request for Letters of Intent for ichthyosis research
Calling all researchers & advocates!
The FIRST Research Grant Program is now accepting applications to support innovative studies into ichthyosis and related skin conditions — from uncovering causes to developing better treatments and improving quality of life for patients and families.
What’s being funded:
• Pilot Grants — up to $15,000 for one-year exploratory projects and early-career investigators.
• Research Grants — up to $50,000 for one year (with potential for a second year), aimed at high-impact, patient-relevant research.
2026 Application Timeline:
• March 2: Letters of Intent due
• May 4: Full grant application deadline
• October 1: Funding starts
If you’re passionate about advancing science and making an impact in the ichthyosis community — this is your moment!
Learn more & apply: https://www.firstskinfoundation.org/first-research-grant-program
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. |
Narcolepsy Network
Narcolepsy Network is the original nonprofit organization serving people with narcolepsy and idiopathic hypersomnia in the U.S. They help improve and support the lives of thousands of patients, providers, and partners in the tight-knit narcolepsy and idiopathic hypersomnia community, serve as a leading source for clinical updates and education, and partner with the industry to influence healthcare policy.
Now, they’re looking for a mission-driven, operationally minded Executive Director to help lead them into their next chapter. This role is for someone who: ✅ Thrives in small, nimble nonprofit environments ✅ Can manage programs, partners, and people with trust and clarity ✅ Knows how to balance empathetic leadership with operational rigor ✅ Understands (or is eager to learn about) the healthcare and rare disease communities
Salary: $130,000–$145,000 (based on experience and location)
Benefits: 401(k), Health Reimbursement Arrangement (HRA covering ~70% of healthcare costs),
PTO Location: Remote (U.S. based) Travel: 3–5 trips per year (including conference) Start Date: Q2 2026
Application Deadline: January 31, 2026 (rolling review) If you—or someone in your network—is a strong nonprofit operator looking to lead with heart, rebuild with focus, and deliver for patients when they need it most, they would love to hear from you. Learn more + apply here: https://lnkd.in/eV9iB23Q
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/
