EB Research Partnership
EB Research Partnership (EBRP) is a national leader among non-profits focused on rare diseases. It is the largest nonprofit in the world dedicated to funding research to treat and cure Epidermolysis Bullosa (EB), a group of devastating and life-threatening genetic skin disorders that affect children from birth. EBRP receives support from individuals, corporations, and foundations. It has adopted a venture philanthropy model taking concepts from venture capital investing and applying them towards achieving philanthropic goals.
Initiate and lead a $25M comprehensive fundraising campaign. Cultivate relationships from a variety of sources including individual, foundations and corporations.
Grow current donor base and expand annual fundraising efforts including managing three annual, marquee events and volunteer-led regional efforts.
Oversee stewardship efforts to ensure that all donors are well-informed, acknowledged in meaningful ways, and appreciated in an appropriate manner throughout the year.
Actively engage and energize volunteers, board members, event committees, and donors to help achieve fundraising goals.
Curate multiple social media platforms including a series of online presentations that engage an international community of patients and supporters.
Effectively conceptualize and communicate scientific research in a compelling, donor-centric manner through a variety of platforms and publications.
Partner with and support Board of Directors. Serve as ex-officio of each committee. Oversee preparation of agendas for regular and special meetings of the Board and committees and maintain minutes of meetings.
Ensure up-to-date data and records and produce progress and financial reports for Board.
Work to maximize the fundraising outreach to each Board member’s network.
Manage three direct reports.
Be a player/coach with a positive and accessible presence.
Set high standards for professionalism, work product, and collegiality and hold staff accountable for maintaining them.
Responsible for fiscal management that anticipates operating within the approved budget, ensures maximum resource utilization, and maintains the organization in a positive financial position.
Manage a variety of external vendors efficiently.
Strong written and verbal communication skills and a persuasive communication style.
A track record of success soliciting, negotiating and closing six and seven-figure gifts from individuals.
Integrity, a positive attitude and self-directed and entrepreneurial work style.
Sound understanding of development best practices, including team member roles and responsibilities as well as the systems and procedures required to support successful annual giving and major donor efforts.
Experience with strategic and annual planning, project management, and process improvement efforts.
Passion for EBRP’s mission.
EB Research Partnership
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