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.
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.
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
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 Family Services Coordinators will be required to follow instructions and perform other duties as requested by the Family Services Manager. Essential elements may change when necessary.
To apply, please send your resume along with a cover letter and salary requirements to Hope Newport, Family Services Manager at firstname.lastname@example.org. Applications will be accepted through September 23.
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
Telecommuting is allowed.
Additional Salary Information: Please send salary requirements with cover letter.
About International Fibrodysplasia Ossificans Progressiva (FOP) Association
The International Fibrodysplasia Ossificans Progressiva assocation is a 501(c)3 nonprofit organization that provides hope to individuals with FOP and their families through education and support programs while funding research to find a cure for the rare genetic condition fibrodysplasia ossificans progressiva (FOP).