Careers

The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is currently accepting applications for the FOP Registry Project Manager position. 

Position overview:

The IFOPA is seeking a self-motivated individual to manage a global registry on behalf of the FOP research community. The FOP Registry serves to secure the improvement of patient outcomes by developing a robust, comprehensive and global dataset on FOP, accelerating the development, approval and access to new therapies.

This position works 3 to 4 days per week and the Registry Project Manager will work from home, which can be located anywhere in the United States. The project manager will report to the Director of Research Development & Partnerships.

Job responsibilities:

Key components of this position include data collection and management, strategic registry planning, executing registry enhancements, clinical site liaison, contracting and management, advisory board management, data reporting and publication planning. External stakeholders include medical advisory board members, patient advisory board members, and IFOPA’s third-party registry vendors.

  • Develop an integrated global Annual Registry Plan, with the Medical Advisory Board and the Director of Research
  • Coordinate and execute all deliverables in Registry Plan, including medical and scientific publications
  • Coordinate with the third-party vendor to implement new enhancements (e.g. mobile app, flare diary) to the Registry
  • Coordinate Medical and Patient Advisory Boards as needed; manage the execution of Advisory Board Meetings
  • Manage the rollout of the medical portal, including site contracting and investigator training  
  • Work with biostatisticians and Direct of Research on data requests and the development and distribution of Registry reports
  • Oversee data quality management
  • Present at patient meetings to communicate the value and importance of the FOP Registry
  • Ensure full compliance with all organizational, regulatory and industry policies

Basic qualifications:

  • Bachelor’s degree in relevant discipline
  • At least 3 years’ project management experience, preferably including registries, observational studies, and/or clinical studies
  • Experience working on registries and/or clinical trials
  • Track record of building strong working relationships with medical advisors
  • Hard-working, energetic and passionate about making a difference for patients
  • Outstanding interpersonal skills, including building strong working relationships, and managing and resolving conflict
  • Excellent communication skills; oral and written, including presentation skills
  • Ability to work independently
  • Some domestic and international travel will be required (~10%) 

Preferred qualifications:

  • At least 3 years of experience in the biotechnology, pharmaceutical or medical device industry
  • Medical or scientific degree and/or professional credentials
  • Experience in developing, conducting and publishing peer-reviewed scientific or clinical research
  • Knowledge or experience in epidemiology, clinical research, drug development or health policy

About the IFOPA

The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is an international nonprofit organization fostering medical research and providing education and support for those afflicted by the rare genetic condition fibrodysplasia ossificans progressiva (FOP). The IFOPA’s mission is to fund research to find a cure for FOP while supporting, connecting and advocating for individuals with FOP and their families, and raising awareness worldwide. A volunteer board of directors, which may range in number from 9 to 15, most of whom have FOP or a child/grandchild with FOP, governs the IFOPA. We hold ourselves accountable to the FOP community. As an organization, we work closely with patients and families, national FOP organizations, leading clinicians, scientists and drug developers.


The IFOPA is committed to creating a diverse environment and is proud to be an equal employment opportunity employer. All qualified applicants will receive consideration for employment without regard to race, color, religion, gender, gender identity or expression, sexual orientation, national origin, genetics, disability, age, or veteran status, as well as any other category protected by federal, state, or local laws.

The job requirements may change when necessary or as needed. This job description does not state nor imply that these are the only duties to be performed by the jobholder. Essential elements may change when necessary.

To apply, please send your resume along with a cover letter and salary requirements to Adam Sherman, Director of Research Development & Partnerships.

Make a Difference

Donate Connect Fundraise

Already a Member? Sign In

Sign Up for FOP Connection, Our Monthly eNewsletter