Interested in working for the IFOPA? 

Open Position:

Donor Relations & Administrative Coordinator

Location: Kansas City, MO

Description of Organization: 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.

Position Overview: The IFOPA is seeking a highly motivated and passionate individual with interest in and experience serving a nonprofit organization. The position will focus on providing support to the Executive Director and Board and managing communications with and for stakeholders including patients and families, clinicians and researchers, and donors and fundraisers. The successful candidate will have experience in social media and donor relations, pays attention to details, is capable of managing several projects at once, can self-manage daily tasks and maintains a strong customer service focus.

Position Responsibilities:

• Participate in monthly strategy sessions on e-communications and social media (to include, but not limited to, Facebook, Twitter, LinkedIn, Pinterest). Then administer the plan, including sending mass emails, making social media posts and responding to comments and messages.

• Make updates to the website and fundraising pages

• Create and issue monthly FOP community newsletter on the first day of each month

• On a monthly basis, prepare birthday cards to be sent to patients and families, donors, clinicians and researchers

• On a weekly basis, run the $100 donor report and assign thank you calls and prepare thank you cards

• On a bi-weekly basis, run and distribute In Honor Of/In Memory/Fundraising Coordinator reports and distribute

• Coordinate event logistics, including event registration, air travel and ground transportation, hotel reservations, food and beverage, audio-visual, etc and prepare materials for various IFOPA events, including, but not limited to, board meetings, family gatherings and the Drug Development Forum

• Monitor the organization’s general email boxes and respond or route emails, as necessary, to appropriate staff

• Make database updates and run reports as needed

• Track volunteer hours

• Track gifts-in-kind

• Collect and file Board and committee minutes electronically

• Coordinate travel for staff and Board

• Work with committee chairs to schedule and manage committee meetings

• Purchase items granted through the Quality of L.I.F.E. Awards program

• Fulfill requests for patient packets and FOP awareness materials

Position Requirements:

• BS/BA degree preferred

• Nonprofit experience required

• Relevant experience in donor relations, social media and e-communications

• Strong project management and general organizational skills

• Ability to work independently and effectively in a virtual setting

• Excellent attention to detail, strong written and verbal communication skills

• Expertise with Microsoft Office (Word, Excel, and Powerpoint) and Google for Nonprofits

Hours, Supervision and the IFOPA Office: This position works approximately 25 hours a week and reports to the Executive Director. All IFOPA staff members work remotely; the Coordinator will meet in person at least once a week with the Executive Director.

To apply, please send your resume along with a cover letter and salary requirements to Michelle Davis, Executive Director, at

Please check back periodically for new postings. 

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