Job Description

Lead the development and execution of Lipedema Foundation’s strategy to define the lipedema research space. LF is a private grant-making 501c3/509a that funds high risk, high reward scientific and clinical research (venture philanthropy) dedicated to the diagnosis and treatment of lipedema. Lipedema is a female condition where irregular fat builds up in the arms and legs, sometimes with pain and swelling. It is widespread but not well-known.


Duties and Responsibilities

The Director will work closely with the Founder and the team to design and execute LF’s strategy:

-       Grow awareness among multiple stakeholder groups: researchers, surgeons, doctors, therapists, and the general public

-       Build network of collaborative scientific investigators, clinicians and educators; build out boards

-       Lay groundwork for upcoming complex, large-scale research projects

-       Source ad hoc venture capital projects

-       Enhance the lipedema research space: cultivate interest, lower barriers to entryease communication and accelerate efficiency


Requirements and Qualifications

Ideal candidates will have experience and proven track record in:

-       Disease-focused private foundations or public non-profits, or related space 

-       Startups

-       Executive-level strategic planning and execution

-       Team building and personnel management; outsourcing

-       Software, data and technology

-       Breadth and depth of managing day-to-day work across all functions

-       Scientific proposal review, grant assessment, & contract negotiation

-       Securing Personal Health Information (PHI/PII)

-       Marketing

-       Scientific proposal review, grant assessment, and contract negotiation


-       PhD or advanced degree in biology, chemistry, bioengineering or related field, and

-       MBA or MPH


-       Excels in big-picture strategy and driving the details to implement it

-       Tenacious and forward-thinking

-       Comfortable representing the foundation publicly

-       Able to transition seamlessly between various colleagues: scientists, patients, physicians, staff, and outsourced teams

-       Values transparency and collaboration

-       Ability to travel ~25-50%


About Lipedema

Lipedema is a female condition where irregular fat builds up in the arms and legs, sometimes with swelling and pain. It can be mistaken for - and coexist with - obesity and lymphedema. It is widespread, but research and treatments are lacking due to limited awareness and because there is no diagnostic test. Adolescent and adult women are affected. Key awareness statistics show large growth in recent years, such as 200+ social media groups and pages and a YouTube channel with over 250,000 views created by LF’s founder. There is a negative impact on quality of life due to physical pain, loss of mobility, quality of life and confusion with obesity. Currently, there is no diagnostic test (gene, imaging, blood or other biomarker) but “we know it when we see it”. Initial small-scale research is intriguing and deserves to be investigated further (see links at

-       Early-stage lipedema may be protective against diabetes, high cholesterol and high blood pressure

-       Tissue sodium content may be elevated

-       Stem cells may not differentiate well

-       Lipedema tissue can be imaged


About LF

We have funded 26 grants with a variety of institutions, locales, and PI experience level. We intentionally seek truly collaborative researchers because of the early stage of research. LF maintains its focus by outsourcing non-core functions (marketing/SEO, legal, accounting, IT, software) and maintaining an intentionally narrow scope. Current management includes the Founder in CT, and the Chief Science Officer in MD, with a support staff of 3. We have offices in Greenwich, CT, near Bethesda, MD, and we have office space available in New York, NY. This is a full-time position with benefits and flexibility.

Our 2019 initiatives include

-       Pilot of complex research program

-       Host scientific retreat

-       Launch patient registry

-       Develop awareness campaign

-       Assess data from, and collaborate with, 25 funded projects

-       Utilize retreat outcomes and project data to refine and implement the research roadmap

What we don’t do

-       Fundraising for the next ~2-4 years (we are privately funded)

-       Extensive advocacy work, direct patient support, patient counseling or fund treatments for individuals

-       Fund research specifically around obesity, lymphedema, Dercum’s or liposuction

-       Lobbying, politics or work with payors