The full-time position will report to and assist the Lipedema Foundation’s Executive Director and Chief Science Officer in addressing the research challenges facing lipedema. The position will require registry and database management training, thus potential applicants will be required to work on-site.
The Program Associate position will be based in Takoma Park, Maryland. Compensation will be commensurate with level of relevant experience.
About the Lipedema Foundation
The mission of the Lipedema Foundation is to define, diagnose, and develop treatments for lipedema. The poorly understood disease is a chronic condition that occurs almost exclusively in women, and presents as a buildup of painful fat and swelling in the arms and legs, sparing the hands and feet. Since 2015, the foundation has committed over $5 million dollars towards lipedema research to identify the drivers of disease and develop diagnostic tools. With a focus on collaborative research and transparency, the foundation aims to employ traditional and novel methods to sustainably build the nascent lipedema research community. The Lipedema Foundation is a US 501c3 non-profit and 509a private family foundation, with offices in Connecticut and Maryland.
Roles and Responsibilities
Registry and Public Tools Management/Development – 30% effort
- Identification of existing, relevant resources for registry users. Development of targeted material to address the scientific and societal misconceptions of lipedema.
- Patient portal management – how to engage, recruit, and maintain the registry for patient users
- Researcher portal management – facilitation of access, management of a review committee/advisory board for requested queries
- Lipedema research papers online tool
- Serve as a liaison with patient organizations and awareness efforts
Operations support – 30% effort
- Assist with webpage editing and website design
- Marketing channel pushes and stats assessment of email, Facebook, Twitter, SmugMug and other social media efforts
- Accounts management and maintain billing and related information
- Internal document organization
Grants and Contacts Database Management – 20% effort
- Database entry and platform optimization
- Grantees and Contacts management, tracking, and engagement points
Longer Term Projects with CSO Supervision – 15% effort
- Independent Research/Professional Development including, but not limited to projects such as: lipedema diagnosis meta-analysis; quality of life surveys; medical professional engagement
Scientific Retreat Logistics and Execution – 5% effort
- Site visits, restaurant selection
- Agenda development and on-site staffing
- Post-retreat Assessment/Deliverables
- Bachelor’s degree, generalist; science and research awareness, administrative and database management experience a plus
- Demonstrated ability to work independently and in team-based efforts
- Attention to detail and proven ability to prioritize, multi-task, and adapt shifting projects/focus
- Understanding and sensitivity of patient experiences
- HIPAA guidelines awareness and/or interest and capability to learn
- Non-profit and/or private foundation awareness
- Interest in travel
Applicants interested in the position are invited to submit their information and resume to: https://www.lipedema.org/jobs.