Career Opportunities

Join Our Team

We are a team of dedicated advocates who work to build awareness, educate the global community, and provide critical connections and resources that equip advocates to become activist for their disease. We are always interested in hearing from those that have a passion for our mission and skill and experience that may contribute to our achieving our mission.

Please submit resumes and cover letters to [email protected].

Principal Investigator,
RARE-X Research Program

ROLE SUMMARY:

As the Principal Investigator for the RARE-X Research Program, you will be responsible for an innovative research program developing patient-owned data to characterize rare disorders and capture patient and caregiver experience. Launched in 2021, the RARE-X research program enables robust data collection, sharing, analysis and federation of natural history data for rare disease. RARE-X is a cross-disorder research program, currently collecting data for over 50 rare disease, including neurodevelopmental, neurodegenerative, neuromuscular, immunology, renal, and mitochondrial conditions.

Director, RARE-X Research Consortia

ROLE SUMMARY:

As the Director of RARE-X Research Consortia, you will be responsible for structuring and managing multi-stakeholder research consortia focused on specific disease areas. Launched in 2021, the RARE-X research program enables robust data collection, sharing, analysis and federation of natural history data for rare disease. RARE-X is a cross-disorder research program, currently collecting data for over 50 rare diseases, including neurodevelopmental, neurodegenerative, neuromuscular, immunology, renal, and mitochondrial conditions.

Director, Community Engagement
– RARE-X Research Program

ROLE SUMMARY:

The Director of Community Engagement role in support of the RARE-X Research Program, is critical to the growth and success of RARE-X and the support of our patient community partners. The right candidate will be a seasoned professional with experience and an understanding of the rare disease patient advocacy ecosystem, the evolving role and needs of patient advocates in research and have the ability to engage deeply and support advocates as it relates to the RARE-X research program. We are looking for a team member who is motivated by the RARE-X mission, and who has the experience and desire to lead Community Engagement efforts and represent the organization within the rare disease ecosystem.