Executive Director of CLOVES Syndrome Community
The vision of CLOVES Syndrome Community (CSC) is an improved quality of life for those living with CLOVES syndrome. Our mission is to support, educate, empower and improve the lives of those affected by CLOVES syndrome. CSC does this by cultivating a thriving patient community, convening medical and family conferences, publishing books for children, funding medical research and assisting families with long term medical costs. CSC’s stakeholders are international and include: Individuals diagnosed with CLOVES syndrome and their families, friends, and caregivers; physicians and medical and allied health professionals; researchers; therapists; teachers; biotech and pharmaceutical companies; CLOVES Syndrome-related foundations and nonprofit organizations; and individuals with PIK3CA Related Conditions and their associated patient advocacy organizations. CSC has grown substantially since its inception in 2009, and all stakeholders look forward to continued growth and impact from the organization.
EXECUTIVE DIRECTOR ROLE OVERVIEW
The Executive Director of CLOVES Syndrome Community is the leader and visionary who creates momentum for the organization and community and inspires others to do so as well. We are seeking an energetic leader to carry CSC to the next level of growth so that we can increase the impact on the community we serve, patients and families with CLOVES and PROS. This is a 40 hour per week full-time, contractor position. We are open to considering candidates across the United States.
PRINCIPAL DUTIES AND RESPONSIBILITIES
Development & Fundraising:
Create and implement an end-to-end development and fundraising plan.
Drive a donor centric, mission driven culture, building relationships and implementing best practices to accomplish financial goals.
Execute fundraising strategies to raise funds from corporations, individuals, and foundations, as per our fundraising plan.
Developing and implementing a communications strategy for attracting and retaining supporters, sponsors and donors.
Reaffirm the organization’s strategy and mission. Build and implement a strategic plan to effectively deliver on both.
Assess all current activities and focus areas for CSC, and determine where the organization can make the largest impact; organize the team around accomplishing clearly defined goals around making the desired impact.
Responsible for communicating effectively with the Board and providing, in a timely and accurate manner, all information necessary for the Board to function properly and to make informed decisions.
Effectively develop business systems and processes and ensure appropriate implementation of the strategy.
Maintain ethical standards and accountability, manage risk, perform due diligence, and implement operational best practices.
Maintain processes for proper record keeping and internal financial controls.
Oversees the scientific Collaborative Research Network for PIK3CA Related Conditions.
Management and supervision of volunteers, contract laborers and staff.
Branding & Public Relations:
Responsible for the enhancement of CSC’s image by being active and visible in the community and by working closely with other professional, civic and private organizations.
Serve as CSC’s primary spokesperson to the organization’s constituents, the media and the general public.
Establish and maintain relationships with various organizations and utilize those relationships to strategically enhance CSC’s Mission.
- Five years working in leadership positions within the non-profit space
- Effective communication–written, verbal, and presentation skills
- Experience or direct exposure to managing the financials of a non-profit organization
- Successful track record of ongoing fundraising for a non-profit organization
- A passion for the rare disease community
Nice to have:
- Accredited Social Work or similar background
- Experience in an Executive Director capacity
- Scientific or healthcare background
- Familiarity with CLOVES and PROS, or related genetic conditions
What we can offer you:
- Opportunity to make a direct and significant impact on patients and families impacted by CLOVES
- Flexible hours
- Work from home
- Competitive pay of $60,000 a year
Occasional evening meetings and travel are required. People with CLOVES and PROS are encouraged to apply.
Please forward a cover letter and resume or CV to [email protected]
In your cover letter please include: 1- Reasons you are an ideal candidate for the Executive Director position of CSC and 2 -How you have successfully implemented fundraising and development plans.
Interviews will begin in mid-June 2023.
CLOVES Syndrome Community is a 501(c)(3), nonprofit organization that embraces diversity. We are committed to building an inclusive community, where all individuals and groups belong. CLOVES Syndrome Community supports people with disabilities, the empowerment of women, people from diverse backgrounds, the LGBTQ+ community, and groups that have been historically marginalized. We know that we are stronger together.
Our organization intentionally prioritizes international collaboration and inclusion, programs and initiatives that address the unmet needs of our patient population as well as user accessibility of our website and other educational resources. We are committed to ensuring that medical jargon and research progress is understandable to patients and families. We know that learning about and integrating diversity, equity and inclusion, is an ongoing work in progress. We are committed to that work.
Please join CLOVES Syndrome Community, as we bring together families, healthcare providers, patients and diverse stakeholders together, to improve the quality of life for people with CLOVES.