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.

Manager of Patient Services – The Multiple System Atrophy Coalition

The Manager of Patient Support Services is responsible for the development and implementation of patient-centric support services provided by the MSA Coalition. These include the delivery of direct patient support and guidance, enhancement of patient and care partner educational resources, and meaningful collaboration with the entire multiple system atrophy community to ensure the Coalition positively impacts those with lived experiences with the disease. Learn more.

Patient Registry Coordinator – Raymond A. Wood Foundation

The Raymond A. Wood Foundation (RAWF) is hiring a part-time Patient Registry Coordinator to help the building and growth as well as manage the day-to-day activities of the first international patient registry for hypothalamic-pituitary brain tumors. The goal of the registry is to create an international central repository of caregivers/ patients entered data about living with hypothalamic-pituitary tumor syndromes in the short term with the ultimate aim of improving care and developing new and better therapies. You will join a passionate team who strives to make a meaningful impact in the lives of patients and their families affected by these diseases. Learn more.

Development Director – Gorlin Syndrome Alliance

The Gorlin Syndrome Alliance is excited to be hiring for their first Development Director. They look forward to hiring a dynamic individual who is dedicated to their rare disease and ready to help move the organization forward. Learn more.

Content Marketer – Narcolepsy Network

Narcolepsy Network is seeking a full-time content marketer. They are looking for a scrappy, results-oriented, self-starter who is comfortable operating in a dynamic environment and wearing a few other hats as needed. Learn more.

Program & Volunteer Manager, Content Marketer – Narcolepsy Network

Narcolepsy Network is seeking an experienced Program & Volunteer Manager to grow their educational and support programs for Narcolepsy and Idiopathic Hypersomnia. They’re also looking for a Content Marketer to promote and strengthen the visibility of their programs & key activities. Learn more.

Executive Director – United Leukodystrophy Foundation

The United Leukodystrophy Foundation (ULF) is seeking an Executive Director with strong fundraising experience. The ULF’s mission is to provide support to the leukodystrophy community and enable platforms to accelerate improving patient quality of life and finding cures. Learn more.

Science Director – The Tatton Brown Rahman Syndrome (TBRS) Community 

The TBRS Community is Seeking a Science Director to work 20 hours per week, remote contract work with occasional travel, $50/hour. This is a consultant position with purpose – the chance to improve the lives of people with a rare disease. Working with our collaborative network of clinicians and scientists who study Tatton Brown Rahman Syndrome (TBRS), the Science Director will advance research toward understanding and treating TBRS. The TBRS Community offers a supportive, inclusive environment where staff, consultants, and volunteers can apply their talents to make a difference in others’ lives. Learn more.

Program Specialist – International Fibrodysplasia Ossificans Progressiva Association (IFOPA)

The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is an international nonprofit organization fostering medical research and providing education and support for those afflicted by the rare genetic condition fibrodysplasia ossificans progressiva (FOP). The IFOPA is hiring a Program Specialist, responsible for fundraising, communications and programmatic administrative duties throughout the organization. This is a full-time, remote position. To apply, please send your resume along with a cover letter to [email protected] by April 21, 2023. Learn more.

Marketing and Communications Specialist – The United MSD Foundation   

The United MSD Foundation seeks an enthusiastic, experienced, and mission-driven Marketing and Communications Specialist to join their team as they advance ever closer to a cure for MSD. The ideal candidate will take initiative, be resourceful, and exhibit a problem-solving mindset. The successful candidate must be able to communicate effectively with a diverse range of stakeholders from patient families to funders to the scientific community. This position gives the right candidate flexibility to be a creative storyteller while changing lives and science. Submit your resume with a link to your portfolio of work or 3 samples of marketing and communications work to Sarah Cortell Vandersypen, Executive Director, at [email protected]. Apply by April 6 for priority consideration. Learn more.

Executive Director – The Mowat-Wilson Syndrome Foundation  

The Mowat-Wilson Syndrome Foundation has an opening for an Executive Director. The Executive Director will report to the Board of Directors and will have overall strategic and operational responsibility for Mowat-Wilson Syndrome Foundation’s programs, staff, and execution of its mission. Knowledge of the rare disease community would be preferred. This is a part time, remote position. Please email [email protected] your resume to apply. Learn more.

Operations Coordinator – The Appendix Cancer Pseudomyxoma Peritonei Research Foundation (ACPMP)

The Operations/Program Coordinator manages the day-to-day business operations of the ACPMP Research Foundation including cross functional collaboration with the Board, business partners and volunteers to advance the foundations mission and achieve common goals. The ideal candidate will have proven non-profit experience, excellent communications (written and oral), knowledge of non-profit donation platforms, excellent Microsoft office skills and proven project/event management experience. To apply please send a resume and cover letter to [email protected]. Review of applications on a rolling basis, continuing until the position is filled. Learn more.

Associate Development Manager – The Life Raft Group

The Life Raft Group (LRG) is currently seeking to fill an Associate Development Manager position. Candidate must have a great personality, be comfortable interacting with patients undergoing cancer treatment and their caregivers, and one to three years of office experience. Primary responsibilities of this entry level manager include assisting with cultivating and engaging donors, identifying and soliciting corporate sponsors for events, managing fundraising event logistics, working with volunteers and assisting with fundraising appeals and donor acknowledgement program. This is a hybrid position located in Wayne, NJ. Learn more.

Part-Time Administrative Coordinator – The Appendix Cancer Pseudomyxoma Peritonei Research Foundation (ACPMP)

ACPMP has an opening for a part-time administrative coordinator to assist with management of day-to-day operations for this small non-profit organization. This a 15-25 hour per week position, Flexible days, and hours. This position is remote. Staff coordinates by phone and Zoom. Compensation ranges from $16.00 – $20.00 per hour depending on qualifications. This position reports to ACPMP’s Board Members. To apply please send a resume and cover letter to [email protected]. Review of applications on a rolling basis, continuing until the position is filled. Learn more

Patient Registry Manager – The Stiff Person Syndrome Research Foundation

The Stiff Person Syndrome Research Foundation is hiring a part-time and remote Patient Registry Manager! The manager will lead the development and implementation of The SPSRF Patient Registry and natural history study. The SPSRF registry will collect data from Stiff Person Syndrome (SPS) patients with the goal of improving care and developing new and better therapies. Learn more.

Development Manager – The Recurrent Respiratory Papillomatosis Foundation

The Recurrent Respiratory Papillomatosis Foundation (RRPF) is hiring a part-time, contract-based Development Manager. The part-time Development Manager is part of our growing leadership team and is responsible for working with the RRPF President, and the RRP Foundation, to steward the Foundation’s development activities. The Development Manager supports the efforts to strengthen the RRP Foundation’s individual and corporate donor programs, including stewardships of major gifts, recurring and planned donations, and other key areas of development. Learn more.