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Openings from Member Organizations

NORD’s membership is comprised of a diverse array of patient organizations. Currently we have 280 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 VHL Alliance is seeking a dynamic Development Director to join their team! Contact Chandra Clark ([email protected]) to learn more about this career opportunity. Learn more.

Wings of Hope is seeking a Global Humanitarian Network Manager responsible for improving the sustainability of their global programs through fundraising and impact initiatives. This is a great opportunity for someone seeking to positively impact communities around the world. Learn more.

Tatton Brown Rahman Syndrome Community has an opening for a Research Coordinator. This is a 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 Research Coordinator will advance research toward understanding and treating TBRS. The Coordinator will also build relationships with families so their priorities continue to guide our mission. At the TBRS Community we offer a supportive, inclusive environment where staff and volunteers can apply their talents to making a difference in others’ lives. For questions, please contact:
Jill Kiernan, Executive Director at [email protected] The position is part time and remote work. Learn more.

The Myotonic Dystrophy Foundation (MDF) announces a new role, Community Programs Coordinator, to achieve educational, support, and other programs serving individuals living with myotonic dystrophy (DM), their families, and their providers. Learn more.

The Williams Syndrome Association (WSA) seeks a dynamic and visionary Executive Director to build on its 40-year history as the leading resource for individuals with Williams syndrome. The new director will lead this vibrant and close-knit organization through its next exciting stages of growth. WSA provides resources and referrals, funds research, and offers a range of programming and lifetime community support for over 6000 individuals with Williams syndrome and their families, and the professionals who serve them. WSA is based in Troy, Michigan but this position may be remote anywhere in the United States. Learn more.

The International Rett Syndrome Foundation (IRSF) is seeking a motivated scientist to support and enhance the basic and translational science program of IRSF focused on advancing the science towards treatments and cures for Rett syndrome. The Research Program Manager is a full-time position reporting directly to the Chief Science Officer (CSO) of IRSF. Learn more.

The Myotonic Dystrophy Foundation (MDF) seeks a creative fundraising genius and Salesforce wizard to sustain successful programs and develop new revenue streams. The Development Manager is responsible for the leadership and administration of fundraising. MDF has a ten-year track record of successfully raising its annual strategic operating budget to support the organization’s ambitious and critical work. Learn more.

The Myotonic Dystrophy Foundation (MDF) seeks a flexible, experienced administrator who is detail-oriented and well organized. The Manager is responsible for all aspects of daily administration and operations for a mission-driven, nimble, entrepreneurial non-profit, currently located in Preservation Park in Oakland, CA. Key responsibilities include front-line phone interface and problem-solving, basic accounting, office operations and administrative support related to finance, communications, and fundraising, basic staff and program support. Learn more.

The Patient Education Coordinator is responsible for leading the delivery of clinical education and patient support. Reporting to the Director of Education working closely with the Board of Directors and volunteers, the Coordinator is responsible for direct patient engagement of resource navigation, support groups, and other community events. Learn more.

The Director of Education is responsible for leading the overall programmatic delivery of education and support to our community for maximum impact. Reporting to the Executive Director and working closely with the Board of Directors and volunteers, this role is responsible for the overall health communication activity, and education of patients and physicians, including community support. The Director will develop and implement appropriate strategies and methods to facilitate mast cell disease content and
resources for a diverse audience of mast cell disease families and physicians across the country in order to help TMS fulfill our mission. Learn more.

The Moebius Syndrome Foundation is looking to contract with an experienced conference and meetings planner to assist on a part-time basis for projects through July 2022. The main responsibility for this role is to manage the logistics for the Moebius Syndrome Foundation Conference, which is held every two years. The next event is in July 2022 and is being held in Atlanta, Georgia. Learn more.

The APBD Research Foundation is seeking a part-time Communications and Development Manager (CDM) to help join our small team during this crucial period of growth in our community. Working remotely with key members of the board and staff, the Communications and Development Manager will oversee and manage a multi-channel organizational communications strategy and plan. In addition, the successful candidate will support the organization’s development initiatives, including fundraising campaigns and events, donor communications, and grant proposals. In general, 70% of time will be spent on communications duties and 30% on assisting with fundraising and development activities. Learn more.