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Openings from Member Organizations

NORD’s membership is comprised of a diverse array of patient organizations. Currently we have over 270 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 Children’s Rare Disease Research Foundation (formerly Chloe’s Fight) is now recruiting for a board chair and a board member with a focus on development.

Learn more about this opportunity here.

The National MPS Society is seeking a dynamic President/CEO to lead the organization. The President/CEO ensures proper planning, oversight, and direction of the National MPS Society’s research funding, family support programs and fund development activities. More.

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

Dysautonomia Foundation, a small not-for-profit located in mid-town Manhattan, supporting medical care and scientific research for those affected by a rare Jewish genetic disorder, seeks a bright, dynamic individual to oversee fundraising and office operations.
Learn more about this job opportunity.

The Moebius Syndrome Foundation is seeking a strategic, experienced leader who will work under the direction of the Board of Directors to accomplish the goals and objectives of the Foundation. The Executive Director is an executive level operation and administrative position responsible for the overall administrative functions of the Foundation, promoting the interests of the members of the Foundation and implementing efforts to realize the vision and mission of the Foundation.
Learn more about this job opportunity.

The CCHS Foundation is seeking a highly motivated and resourceful individual with a passion for non-profit fundraising and rare diseases to join our evolving team. Our organization has operated through the hard work of family volunteers for the past 29 years. We are thrilled to take this monumental step in hiring our first professional staff member to drive our mission and improve the lives of the ~1,200 individuals living with congenital central hypoventilation syndrome (CCHS). This part-time position will work remotely and report directly to our leadership in California and New Jersey.
Learn more about this job opportunity.

The Alagille Syndrome Alliance (ALGSA), a 501(c)(3) public charity based in Oregon, is hiring a remotely based Development Manager to be responsible for all aspects of fundraising to support the work of the ALGSA according to the strategic direction set by the Board of Directors.

Learn more.

The National Niemann-Pick Disease Foundation is hiring an Executive Director inspired by the challenge of bringing a diverse community together to develop a cohesive and resilient patient organization that takes its advocacy and support services to the next level.

Learn more about this job opening here.

The Lipedema Foundation is hiring a Program Associate to provide the Foundation’s Executive Director and Chief Science Officer with registry, database, and operations support.

Learn more about this job opportunity here.

The ALS Association National Office is seeking an energetic, mission driven professional whose primary responsibility will be managing a well-established contract with the Centers for Disease Control for the ALS Registry. Additionally, the Manager, Public Policy Initiatives will be responsible for coordinating and contributing to all policy communications and be engaged in the development and implementation of assigned public policy initiatives. The successful candidate will experience the gratification of knowing that their work has significant impact on the lives of those dealing with this terrible disease.
Learn more about this job opportunity here.

The National PKU Alliance is seeking a highly motivated and passionate individual with a background in research partnerships and/or drug development to advance the organization’s efforts to enable PKU therapeutic development. The position will focus on developing research infrastructure from a community-based, patient-focused perspective, maintaining and expanding our research partnerships, overseeing our research funding, and maximizing the value of our registry in the drug development process. The successful candidate will have outstanding relationship-building skills, strong knowledge of drug development, and a passion to make a difference in rare diseases. The deadline to apply is April 30, 2018.
Learn more about this job opportunity here.

CFC International is seeking an Executive Director who will be responsible for ensuring CFC International’s financial growth, program development, strategic planning and day-to-day management. The Executive Director works closely with the Board of Directors, medical community, staff and volunteers in accomplishing these goals. The position has  a flexible schedule and may be performed from a home office.
Learn more about this job opportunity.

The PHACE Syndrome Community, Inc. (PSC), a 501(c)3 is seeking an Executive Director.  The Executive Director is responsible for overseeing the administration, programs and strategic plan of the organization. The position reports directly to the President with responsibility to the Board of Directors.
Learn more about this job opportunity.