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Openings from Member Organizations

NORD’s membership is comprised of a diverse array of patient organizations. Currently we have over 260 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.

A not-for-profit research foundation in Miami is looking for a writer-editor with a degree in journalism or communications and 3 years of professional experience. Job responsibilities will include writing articles for the organization’s magazine, website and social media; help to write and edit brochures and press releases; work with the director to identify new communications channels. Essential skills are demonstrated writing and editing at a professional level, MS Office, including Word and PowerPoint. Must be comfortable working on a Mac and HTML experience is preferred.  Management experience a major asset.

Please submit resumes or requests for additional information to:

Karen L. Erickson
Associate Executive Director
Community Engagement
Alpha-1 Foundation

National Tay-Sachs & Allied Diseases Association (NTSAD), a family-focused patient advocacy organization, seeks a Director of Development to lead its efforts to raise funds to support affected families and to find a cure for Tay-Sachs, Canavan and related rare genetic diseases, with an annual goal of $1.2 million. This is a special opportunity to join the organization now as we embark upon a year-long 60th anniversary celebration.

The ideal candidate will have a successful track record meeting or exceeding annual fundraising goals utilizing various fundraising strategies, including Annual Fund giving, events, and grants. Candidates will have the capability to build, develop, and retain strong, positive relationships with donors and NTSAD family members. S/he will be a creative thinker with the ability to inspire and communicate effectively, both in person and through written communications, with individuals, foundations, and board members, and be comfortable asking for money. S/he will work well in a small collaborative environment, be sensitive and be flexible. The position reports to the Executive Director. A personal connection or experience with the rare disease community is not required, but is preferred. A flexible schedule may be arranged.

More information is available on NTSAD’s web site or by contacting Sue Kahn, Executive Director at 617-277-4463 or

NephCure Kidney International (NephCure) seeks an inspiring, energetic and innovative leader to serve as its next CEO and lead the organization into the future. Established in 1999, NephCure is a global, researchfocused patient advocacy group committed exclusively to supporting research seeking the cause of the kidney disease Focal Segmental Glomerulosclerosis (FSGS) and the diseases that cause Nephrotic Syndrome. The organization is on a singular mission to accelerate and improve treatments for patients and to ultimately find a cure for these diseases. NephCure Kidney International is achieving this mission by: • Funding research around the globe that will continue to move us closer to improved treatment and a cure. • Establishing a clinical trials network to drive research efforts. • Serving as the primary source of information on Nephrotic Syndrome and FSGS. • Leading the charge for legislative action to provide more federal funding for research into Nephrotic Syndrome and FSGS. • Working to attract researchers to this field. • Educating the public and raising awareness about Nephrotic Syndrome and FSGS. This is a full-time position reporting to the Board of Directors. The corporate office is located in suburban Philadelphia but candidates can be located anywhere in the United States.


For more information on how to apply, click here.