Job title:  Science Advisor

Reports to: Executive Director

Organization Summary:

The vision of CLOVES Syndrome Community 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.   CLOVES Syndrome Community 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.  We also bring families together for Betsy’s Camp, an annual opportunity for community, fun and relaxation.   CLOVES Syndrome Community is part of the Chan Zuckerberg Initiative, Rare As One Network— a group of 30 patient-led organizations that are  driving progress in the fight against rare diseases.  We’re proud to be creating a patient-led research network to accelerate research and find treatment options for people with CLOVES and PIK3CA Related Conditions.

Position Summary and Responsibilities:

The Science advisor will play an integral part in the development and prioritization of research initiatives based on the needs of those living with CLOVES Syndrome. They will also support the development of an international network, bridging the gap between people with CLOVES, their families, physicians, researchers, and our industry partners. This role is not limited to the below, but may include the following responsibilities:

  • Crowdsourcing to gather the needs of people living with CLOVES and to identify key research questions
  • Strengthening new and existing partnerships with clinicians and researchers across multiple disciplines to support CLOVES Syndrome Community
  • Serving as a liaison across the scientific community to break down barriers and progress initiatives leading to better treatment and outcomes for people living with CLOVES
  • Working with internal teams to communicate complex science in a way that is understandable to a lay audience (ex. Publishing ‘Research Simplified’ articles)
  • Continuing to improve existing internal resources including our scientific literature database and slides summarizing scientific articles on CLOVES and PROS
  • Providing scientific expertise towards the development of our scientific conference and in reviewing RFPs
  • Collaborate, develop and support leadership in the creation of a research roadmap
  • Attend and report progress in meetings with the Board of Directors as well as the Scientific and Medical Advisory Board


  • MS in the Life Sciences; PhD or MD preferred (students welcome to apply)
  • Experience in rare disease and/or genetic disorders
  • Passion and appreciation for the patient voice and prioritization of patient needs in research
  • Strong ability to read, interpret, and communicate key findings from scientific articles
  • Understanding of the drug development process and drug repurposing
  • Strong interpersonal and communication skills
  • Ability to engage various diverse stakeholders ranging from patients and parents to chairs of academic departments
  • Ability to work remotely

This is a one year, contract position for 20-30 hours per month.  Hourly rate is commensurate with experience. 

Please send your resume and a cover letter by Friday May 21st to [email protected]