617-963-0900 Director@NERGG.com

Rare New England seeks part-time Executive Director

Rare New England, Inc. of Attleboro, MA (RNE) seeks a visionary, collaborative and compassionate leader to position the organization for sustainability and expansion by identifying opportunities and anticipating trends in the rare disease community. We are looking for an Executive Director with extensive experience working with patients, families ,providers, and skilled in building teams, developing partnerships, organizing fundraising, and maintaining good communications.

About Rare New England

RNE is a non-profit patient advocacy organization, established in 2016 by a group of medical professionals after recognizing the unmet needs of those affected by rare disease. The organization’s geography includes the N.E. states to further allow for collaboration and partnerships to support RNE initiatives.

RNE’S mission is to bring together New England patients, families and providers touched by rare and complex disorders. We offer educational opportunities; create awareness of available resources and build foundations for support to improve patient quality of life.

RNE strives to reduce the burdens that can come with rare and complex disease by helping patients/ families and providers learn about utilizing community resources, educating patients and providers on rare and complex disorders and promoting awareness of the unique needs of the rare disease community.

RNE is governed by a 6 member board, employs two part time staff,
and manages an annual budget of $ 170,000 . RNE is looking to diversify its funding streams. An interim director is in place and is working with the leadership team to assess partnership opportunities and address staffing challenges so common in the age of COVID.

The Opportunity

The next executive will be responsible for developing and leading the organization in a vision to:

  • Position RNE to strengthen current programs/ services in the rare disease community and explore an expansion of our services.
  • Build external relationships with peers, funders, and stakeholders to determine partnership opportunities to meet organizational needs.
  • Build a culture of teamwork among staff and guide a strong leadership team.
  • Develop and implement innovative methods to recruit, retain and build the skills of staff
  • Develop funding sources to build and diversify revenue streams
  • Influence a workplace and board stewardship culture of engagement, transparency, and trust

Ideal Candidate:

While we recognize that candidates will not possess all the following qualities, ideal applicants will exemplify a number of these attributes, skills, and experiences and will have the capability to oversee an organization of RNE’ size and scope:

  • A Visionary and Strategic Executive
  • Progressive leadership experience in the fields of rare disease, medicine, human services or related field.
  • Demonstrated ability to lead and execute a strategic organizational vision and plan to leverage funding, partnerships, and public awareness
  • An Authentic and Engaging Leader
  • Passion for the mission of RNE and experience working with the participants it serves and represents.
  • Partner to the Board of Directors to expand its impact on behalf of the organization
  • Committed to developing a welcoming, collaborative, diverse, and inclusive work culture and climate
  • Generous in spirit; caring, genuine, down to earth person who is approachable and a good listener
  • A Powerful Communicator and Relationship Builder
  • Proven experience as a fundraiser, particularly with sponsor recruitment, government contracts, grant attainment, and annual appeals
  • Ability to engender the respect, rapport, and credibility of peers, policymakers, and residents
  • A public spokesperson committed to raising ::RNE’s profile
  • Experience in designing and executing partnerships that drive growth and quality care
  • Ability to engage, inspire, and collaborate with RNE staff and Board of Directors
  • Ability to travel to meetings, conferences , events in the N. E. region.
  • A Seasoned Organizational Leader
  • Non-profit acumen in operations, management, finance, and governance leadership at an organization of RNE scale
  • Experience assessing operational needs and building the internal team to execute change
  • A planner, experienced with making decisions based on data

Desired Credentials:

  • A minimum of 5 years of senior leadership or equivalent experience
  • Advanced education relevant to this position

Application Guidelines

Candidates must include a resume and a cover letter that describes how their qualifications and experience match the needs and mission of RNE . Applications will be accepted until the position is filled.

Rare New England is an Equal Opportunity Employer and an Affirmative Action Employer and looks forward to an inclusive hiring process. It encourages a broad range of applicants, including candidates from diverse backgrounds and cultures, particularly candidates of color, LGBTQ candidates and or those with lived experience that represents the communities RNE serves.

Upload required documents to: julie@rarenewengland.org

Job Type: Part Time
Pay: 40,000-45,000
• Flexible Work Schedule
• Remote Days
Schedule: 25 Hours Per week/ Office-Remote