Job Description
Title: Executive Director
Location: Remote living in the US, with 10-15 travel days per year
Terms: Full-time, Salaried Position
About Us
Our mission is to empower patients with pheochromocytoma or paraganglioma, their families and medical professionals through advocacy, education and a global community of support, while helping to advance research that accelerates treatments and cures. Our community is #pheoparaphearless. Learn more at www.pheopara.org
Position Overview
The Executive Director serves as the managing staff of Pheo Para Alliance, a grassroots, patient advocacy organization dedicated to pheochromocytoma and paraganglioma, a rare neuroendocrine cancer. The Executive Director manages the Program Manager (half-time employee) and works with dozens of dedicated volunteers to move the Pheo Para Alliance mission forward.
Responsibilities, including but not limited to:
- Responsible for all mission and fundraising activities under the guidance of the Board of Directors.
- Serve as staff liaison to Medical Advisory Board, Patient Engagement Committee and approximately six other committees.
- Engage with families, funders, industry and other stakeholders to strengthen existing relationships and develop new relationships to further the mission.
- In collaboration with the Medical Advisory Board, oversee the Pheo Para Center of Excellence Program to provide an environment where patients receive the best possible clinical care through a network of centers.
- Hold Awareness Week campaign, in collaboration with the committee, to empower constituents to tell their story, raise awareness among health care providers, educate patients and caregivers on the illness and build understanding amongst constituents of the struggles of patients.
- Support creation of education and awareness programs such as webinars, regional and national conferences and printed and online materials.
- Increase existing sources and establish new sources of revenue and funding by working collaboratively with funders and volunteers.
- Initiate, maintain, and adapt programs (peer support, educational and research conferences) to ensure excellence aligned with the organization and changing environment.
- In collaboration with the Research Advisory Board, support patient-initiated research, such as SCOPPE 2.0, to investigate the patient voice to verify, educate, explore connections and strategically guide the Pheo Para Alliance.
- Manage website, email and social media communications to inspire, educate and empower constituents.
- Work with Board Chair to prepare for Board of Directors meetings held ten times a year, virtually and ensure communications and actions items are on task.
- Work with Treasurer to prepare monthly financials, reconcile Quickbooks, categorize revenue and expenses and prepare the annual budget and 990 filing.
- Support annual fundraising events, such as the Gala, Phitness Challenge and end of year giving and support community fundraisers dedicated to supporting the mission through their fundraising efforts.
- Manage the Program Coordinator and other staff members as needed
Qualifications
- Bachelors (Graduate Degree Preferred)
- Nonprofit Leadership: 7+ years (Experience in rare disease and/or healthcare preferred)
- Experience crafting strategy for a mission-focused, growth-oriented organization
- Skilled at communicating, building rapport, and navigating across stakeholder groups, such as patients, families, industry, non-profits, academic institutions, government groups, and funding agencies
- Emotionally intelligent, a good listener, and has empathy for the challenges faced by patients
- Track record of successful fundraising
- Proven understanding of the operational needs of a nonprofit or similar enterprise, including fiscal experience
- People management experience inclusive of developing, leading, and inspiring teams and leveraging individuals’ strengths to meet goals
- Ability to set priorities decisively, delegate responsibilities, assure accountability and allocate resources to ensure results
Benefits
- Flexible schedule
- Paid time off
- Professional development assistance
EEOC Statement
Pheo Para Alliance believes in a diverse environment and is committed to equal employment opportunity. We do not discriminate in recruitment, hiring, any other employment practices for reasons of race, color, gender, religion, national origin, gender identity, age, sexual orientation, marital or veteran status, disability, or any other legally protected status.
To apply
Submit resume and cover letter by October 31 to info@pheopara.org.