Our 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.  

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). A volunteer board of directors governs the IFOPA. We hold ourselves accountable to the FOP community. As an organization, we work closely with patients and families, national FOP organizations around the world, and leading clinicians, scientists and drug developers.

We are currently hiring a Research Development & Partnerships Director.

Title: Research Development & Partnerships Director

Location: United States 

Description of Research Activities: The gene responsible for FOP was discovered in 2006. Since that time, there have been major advances in the search for treatments and a cure for FOP. In 2014, the IFOPA hosted its first FOP Drug Development Forum and in 2015 launched the only FOP Registry in the world. Also in 2015, the IFOPA launched a competitive research grant program – Accelerating Cures & Treatments (ACT) for FOP. In 2017, the IFOPA created a full-time staff position, Director of Research Development & Partnerships, to fully develop its research strategy. Since that time, a variety of research infrastructure tools have been developed and are owned by the IFOPA – FOP Mouse Model, FOP Biobank and Preclinical Drug Testing Program. The IFOPA recently led an FOP Prevalence Study which will soon be published. In addition to the ACT for FOP Grant Program, in 2018 the IFOPA began funding FOP grants through the Penn Orphan Disease Center Million Dollar Bike Ride Pilot Grant Program and in 2020 funded the first-ever FOP gene therapy grant. In addition to biennial FOP Drug Development Forums, the IFOPA has also convened a Biomarker Consortium, Immunology Working Group and Gene Therapy Working Group. It is a very exciting time in FOP research. View a list of current FOP studies and trials.

Position Overview: The IFOPA’s Research Director is responsible for the development and management of the IFOPA’s research strategy which includes: administering FOP research grants; managing research tools and infrastructure; convening scientific meetings; developing and maintaining relationships with academic, clinical and industry partners; and communicating research and clinical studies & trials news with FOP families. Partnering with the Research Director and the IFOPA’s Research Committee, ACT for FOP Scientific Advisory Board, FOP Registry Medical Advisory Board and IFOPA Executive Director. This position supervises the FOP Registry Project Manager.  

Hours, Supervision and the IFOPA Office: This full-time position reports to the IFOPA’s Executive Director. All IFOPA staff members work remotely from their homes. 

Position Responsibilities: 

  • Provide management oversight for the FOP Registry and the FOP Registry Project Manager, work with the Registry Medical Advisory Board to develop Registry publications and connect the Registry to the rest of the IFOPA’s research programs and activities.
  • Design the agenda and all scientific content for the biennial FOP Drug Development Forum. Work with research partners to convene additional scientific meetings.
  • Develop the request for proposal and promote the IFOPA’s competitive research grants program. Work with the IFOPA’s Scientific Advisory Board for blind review, scoring and selection of grantees.
  • Structure, administer and monitor contractual agreements, including reporting, for the IFOPA’s research grants portfolio.
  • Manage relationships with both academic researchers and industry interested in FOP research.
  • Guide strategic implementation and evolution of the IFOPA’s research tools and infrastructure, which includes managing program operations (e.g. contract negotiations, vendor management) and ensuring output to the community (e.g. reports and publications). Investigate additional research tool offerings.
  • Work with the Executive Director to solicit sponsorship and grant support for IFOPA-led research initiatives.
  • Work with the Executive Director and Family Services Manager to develop educational resources on clinical studies and trials and IFOPA research programs, including, but not limited to, website content, videos, webinars, podcasts and print materials.
  • Represent the IFOPA to external audiences for information sharing and publicity regarding the organization’s research and drug development programs.
  • Partner with the Research Committee Chair to develop the agenda, supporting materials and minutes for meetings. Disseminate relevant information to other staff members and the Board.

Position Qualifications: 

  • Graduate degree in a life sciences discipline preferred
  • Experience working in the industry to advance drug programs or in a nonprofit in a scientific capacity; rare disease experience preferred
  • Experience working on collaborations with industry, academic labs and nonprofits; experience managing the collaborations preferred
  • Experience reviewing funding proposals and allocating grants preferred
  • Experience with patient registries preferred
  • Experience supporting preclinical or clinical-stage research focused on muscle and bone disease preferred; additional experience in rheumatology a plus
  • Comfortable working in a virtual environment. Travel (when possible post-COVID) will be required several times throughout the year, including some international travel
  • Excellent communication and interpersonal skills

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 position requirements may change when necessary or as needed. This position 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 Michelle Davis, Executive Director.

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