Role Summary
The Lipedema Foundation is seeking an outstanding science professional to be at the forefront of a unique area of women’s health research – catalyzing advancement in diagnostic and, ultimately, therapeutic and preventative strategies for Lipedema.

The Chief Science Officer will design, execute, and manage the Foundation’s evolving research agenda advancing early-stage science in Lipedema diagnosis and treatments. Reporting to the Chief Executive Officer, managing a team and collaborating closely with the organization’s Founder and other staff, the CSO will craft and implement a robust grants program of about $2 million annually, and lead other efforts to grow the Lipedema Foundation’s scientific work and impact as well as strengthen the broader Lipedema research field.

Lipedema research is limited though growing quickly, with half of existing papers published in the last 5 years. This role offers a unique and substantial opportunity to grow a team and impact an emerging field, while experimenting with creative new ways to integrate patient input, clinician report, and rigorous scientific research.

Roles and Responsibilities

Strategy, Vision, and Leadership

• Finalize, iterate and own execution of the Lipedema Research Roadmap, a multi-year, multi- stakeholder vision to move the research and identify accessible diagnostic tools and treatments
• Partner with the CEO to staff LF’s advisory committees to inform Foundation research initiatives
• Evaluate the Lipedema research field, including LF funded projects and review project data and insights from across projects to inform LF’s research strategy and overarching work
• Experiment with new approaches that integrate patient and clinician reports to inform research strategy and program
• Collaborate effectively with the CEO & LF’s Founder as a member of the senior leadership team
• Serve as an advisor to other priority field development efforts – for example, external biobanks

Program, Team, and Portfolio Management

• Working with the CEO, plan and hire a research team
• Lead the Foundation’s research programs, including:
  • The LF research award program: managing research team members in developing requests for proposals, executing contracts, managing active and past awards, and communicating award outcomes
  • Other existing and future research programs, including the LF Registry and an impending tissue biorepository
• Refine and update the grant review process and assessment approach, including strengthening the team’s use of external peer review
• Develop new research initiatives consistent with LF goals of advancing promising research
• Manage research program staff and external contractors, with a focus on impact, learning, feedback, and professional development
• Manage program expenses and budget
• Drive the quality of research performed by LF awardees, and help design projects that are published in respected journals

Community Engagement and Field Building

• Grow the Lipedema research and clinical networks, developing new collaborations and connecting relevant topics across specialties in the medical and scientific communities
• Direct programmatic planning of research-oriented symposia and an annual LF Research Retreat
• Leverage access to research community to foster collaborations and dissemination of emergent data within the research community.
• Establish and maintain authentic, patient-centered relationships by actively listening to and involving patients and valuing their unique perspectives
• Build connections with new published authors and members of the existing Lipedema research workforce
• Identify opportunities to promote and elevate grantees’ work in a manner consistent with goals of expanding the breadth and prominence of the Lipedema workforce.

Thought Leadership

• Develop and stay current on world-leading knowledge of the Lipedema research base, including published, presented at conferences, and in-progress; and developing and communicating perspectives on the quality of and insights from published and presented research
• Position Lipedema Foundation as a thought-leader with grantees in the grant making process
• Represent the Foundation as an attendee and presenter at conferences and other events
• Oversee curation of LF’s Legato Lipedema research library

Communications

• Serve as an unbiased scientific representative for the Foundation, communicating complex science in a clear and digestible manner for professional and patient audiences.
• Leverage and integrate patient, clinician and research insights to inform LF communications and awareness efforts
• Create publications and white papers reflecting analysis of Lipedema Foundation data and position statements related to the effective conduct of research.
• Draft occasional communications products, including blog posts and website content
• Review external communications for accuracy, as needed

Qualifications
LF seeks a Chief Science Officer who brings an entrepreneurial, data-driven, rigorously scientific, and collaborative approach to grant making and partnerships; as well as scientific research, healthcare, and grant making expertise. The successful candidate will be proactive and strategic, able to see the broad research picture and formulate a plan to drive towards objectives, managing a team and external

contractors and collaborators to do so. A deep interest in and passion for women’s health is a must, as is a willingness and ability to bridge gaps between the scientific, patient, and clinical communities.

Though Lipedema research is growing quickly, the research base is still thin. The Chief Science Officer will need to balance the imperatives of funding and advancing rigorous research while also working creatively to integrate patient and clinician input and hypotheses.

Key Experiences and Attributes Include:

• PhD, MD, or equivalent (eg, MPH with many years of directly relevant post-academia experience) in a health research field
• At least 7 years post-academia experience, with a preference for research management, startup initiatives, laboratory/research management, and nonprofit funder environment
• Experience in a scientific leadership role with strong team management skills
• Strong background in early-stage scientific research and evidence-based recommendations
• Effective communication and interpersonal skills with the ability to synthesize and communicate complex scientific concepts to diverse audiences
• Ability to balance strategic perspective with programmatic details and experience managing research programs and budgets
• Passion for working in a women’s health field
• Demonstrated ability to develop and maintain collaborative relationships with key stakeholders
• Embraces feedback as an opportunity for growth and improvement, actively seeking and giving constructive feedback in a respectful and open manner
• Strong commitment to ongoing professional development and continuous learning
• Understand best practices for grantmaking and experience working with advisory committees and grant review processes
• Proficient in Google Suite, Microsoft Excel, project management and grants management software, with a desire to improve processes
• Ability to travel up to 20% of the time

We recognize that no job applicant fits a job description perfectly, so we encourage candidates with most, but not all, of the above qualifications to apply.

Physical Requirements

• Capable of travel, minimal meeting and conference booth set up, including moving boxes.
• Capable of standing during booth-related duties at conferences (infrequent).

Inclusivity
The Lipedema Foundation values equity and inclusion, and we encourage applications from people underrepresented in philanthropy to apply. All qualified applicants will receive consideration without regard to race, color, religion, sex, gender, sexual orientation, national origin, age, disability, genetic information, or any other class protected under federal or state law.

About the Foundation and Lipedema
The Lipedema Foundation is a private, non-fundraising foundation established in 2015 to define, diagnose and develop treatments for Lipedema. It has awarded more than $11 million in the US and internationally to date and maintains the Lipedema Foundation Registry.

Lipedema is a chronic medical condition primarily impacting women and characterized by a symmetric buildup of adipose tissue (fat) in the legs and arms, often with pain and, at advanced stages, impaired mobility. It is frequently misdiagnosed as obesity or lymphedema, though Lipedema is resistant to exercise and diet. Lipedema is widespread, affecting millions of adolescent and adult women, but is vastly underdiagnosed. Awareness is increasing; progress includes recognition by the American College of Cardiology and American Board of Obesity Medicine and publication of a standard of care in the United States.

Compensation and Benefits
The salary range for this role is $190,000-225,000 per year. LF offers a competitive benefits package, including generous insurance and retirement benefits.

To Apply: To be considered for the Chief Science Officer role, please submit a resume and thoughtful cover letter using this link: https://bit.ly/CSO_Lipedema. To nominate a candidate, email opportunities@sandlersearch.org with Chief Science Officer in the subject line.