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Family Services Coordinator

Posted: 08/12/2019

Position Overview: Resource Connect: Everyday Tools for Independent Living is a new program designed to empower individuals with FOP and support their caregivers by promoting independence and a problem-solving mindset as a critical tool to cope with FOP disease progression. Through close collaboration with the FOP community, a knowledge of applicable tools and home adaptions will be presented to patients and their families in a variety of different formats including: large group presentations at FOP family meetings in the U.S. and abroad; direct one-to-one consultation via phone, video chat and in-person meetings; social media; and an online guidebook detailing tool use and application.

Job Responsibilities:

Program Development and Evaluation

  • Gain understanding of community needs and develop program resources by monitoring social media, identifying community needs and interacting with community members
  • Research current work available from peer organizations in the rare, genetic and disability communities
  • Develop materials and resources (working with writers, graphic designers and online resource vendors)
  • Revise materials as new information is made available
  • Collaborate with outside organizations to increase Resource Connect-related benefits to community
  • Correspond with families and individuals to learn about additional resources to be included in program
  • Plan and facilitate meetings with Resource Connect Working Committee
  • Track program statistics, including number of community contacts and specific areas of resource requests
  • Conduct surveys with participants to measure impact
  • Publish program resources through papers, journals and presentations at academic conferences
Education and Outreach
  • Give Resource Connect presentations and do one-to-one consultations at IFOPA events in the U.S. and abroad (will require international travel);
  • Partner with members of the medical community to provide training on Resource Connect program content
  • Provide in-person and virtual support to patients and caregivers
Position Requirements:
  • BS/BA degree preferred or relevant certificate in Occupational Therapy
  • Nonprofit experience preferred
  • Must have ability to travel throughout the U.S. and internationally throughout the year
  • Must have ability to work evenings or weekends when families are available
  • Relevant experience in supporting individuals and families with serious health conditions
  • 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
  • Experience with Microsoft Office (Word, Excel, and PowerPoint) and Google for Nonprofits
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, and leading clinicians, scientists and drug developers.

Hours, Supervision and the IFOPA Office: This full-time position reports to the Family Services Manager. All IFOPA staff members work remotely from their homes so the Family Services Coordinator can live anywhere in the United States. 

To apply, please send your resume along with a cover letter and salary requirements to Michelle Davis, Executive Director, at Applications will be accepted through August 31.

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 profile in no way states or implied that these are the only duties to be performed by the jobholder; the Donor Relations & Digital Coordinator will be required to follow instructions and perform other duties as requested by the Executive Director. Essential elements may change when necessary.


Job Type: Full Time