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Openings from Member Organizations

NORD’s membership is comprised of a diverse array of patient organizations. Currently we have over 250 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.

The Aplastic Anemia and MDS International Foundation (AAMDSIF) is a 34 year old patient advocacy organization founded by families whose children were diagnosed with bone marrow failure diseases. The AAMDSIF mission is to educate, inform and help patients, caregivers and heath professionals on bone marrow failure diseases worldwide while also investing in and promoting critical research.

Join this small yet committed and passionate staff who are mission driven and want to make a difference in the lives of patients and their families diagnosed with life threatening bone marrow failure diseases.

As part of the Development Team, this position reports directly to the Chief Development Officer and is responsible for securing individual support from patients, their families, caregivers and friends, through a variety of giving programs including direct mail, online and workplace giving.

Learn more about this job opening.

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

Not-for-profit research foundation in Miami looking for a writer-editor with a degree in journalism or communications and 3 years of professional experience. Writes articles for our magazine, website and social media; helps to write and edit brochures and press releases; works with 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

The IFOPA is seeking a highly motivated and passionate individual with interest in and experience serving a nonprofit organization. The Family Services Manager is the first point of contact with FOP families and is responsible for the development and implementation of a range of services for these families. This position reports to the Executive Director and oversees Family Services functions, including budgetary planning and reporting, program development and implementation, and ongoing evaluation. This Manager will develop a sustainable service delivery system to FOP families, both nationally and internationally.

Apply for this job opening here.

The Children’s Cardiomyopathy Foundation (CCF), a national nonprofit organization based in northern New Jersey, seeks a motivated, assertive, and self-directed individual to assist in the coordination of its family support and physician outreach activities. Reporting to the Director of Family Outreach and Support, the Family Outreach & Support Coordinator will focus on five key initiatives. The position is 30 hours per week with duties performing primarily from the coordinator’s home with one or two monthly meetings in Tenafly, NJ. For more information about this job opening, click here.