The IFOPA is currently hiring for the following position. To apply, please send your resume along with a cover letter and salary requirements to [email protected] by February 10, 2024.
Title: Family Services Coordinator
Location: United States
Organization’s Mission: 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.
About the 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). 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.
Position Overview: Ability Toolbox: Everyday Tools for Independent Living is a program designed to empower individuals with FOP by promoting independence through the use of adaptive equipment, assistive devices and home modifications. The Family Services Coordinator will use their background in occupational or physical therapy to implement the Ability Toolbox program with our community members and their families. Through close collaboration with the FOP community and other IFOPA staff, a knowledge of applicable equipment, devices and modifications will be presented to patients, their families and local healthcare providers in a variety of different formats including workshops and 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 adaptive equipment/assistive device use and application. The individual will also be responsible for facilitating other IFOPA programs (webinars, panels, podcasts, workshops, support groups, resource handouts and a patient grant program) to continue to support aspects of independent living.
Hours, Supervision and the IFOPA Office: This full-time salaried position reports to the IFOPA’s Family Services Manager. All members of the IFOPA team work remotely from home and a designated workspace is needed for any work-related supplies.
Salary Range and Benefits: The salary for this position is commensurate with experience. Benefits include health, life, dental and vision insurance; short-term and long-term disability; generous PTO policy and paid holidays; stipends for the purchase of both home office equipment and a laptop; and a monthly reimbursement for cell and WIFI service.
Position Responsibilities:
Education and Outreach
- Deliver Ability Toolbox presentations, workshops and host adaptive equipment exhibit space at IFOPA events in the U.S. and abroad (will require international travel) in order to meet families face-to-face and provide one-to-one consultations with global community members
- Partner with Family Services Manager to create educational programming (webinars, panels, podcasts, workshops, support groups and resource handouts) on relevant topics for the FOP community
- Partner with members of the medical and dental community to provide training on Ability Toolbox program content, resources and FOP-specific adaptations
- Provide virtual support to patients and caregivers over Zoom, phone, email, text and WhatsApp including recommendations for adaptive equipment and home modifications and coaching on the process of working with a local therapist who can best identify and refer continued supports
- Promote the use of a patient grant program to purchase adaptive equipment or home modifications, manage a volunteer review committee, and collaborate with fellow staff members to fulfill grant requests (domestically and internationally)
- Act as a resource for local rehab service providers, school personnel and community providers
Program Development and Evaluation
- Gain understanding of community needs by monitoring social media and interacting with community members remotely or in person
- Expand the content of the existing Online Guidebook of adaptive equipment used by the FOP community
- Plan and facilitate meetings with Ability Toolbox advisors
- Track program statistics, including the number of community contacts and specific areas of resource requests and make referrals to fellow IFOPA staff for continued patient support
- Conduct follow-up surveys with participants to measure impact
- Collaborate with outside organizations to increase Ability Toolbox-related benefits to the community
- Research additional disability community resources from peer organizations in the rare, genetic and disability communities
- Collaborate with writers, graphic designers and online resource vendors to develop materials and resources to improve program reach
Position Qualifications:
- BS/BA degree preferred or relevant certification in occupational or physical therapy
- Preferred strong working knowledge (or expertise) regarding: home modifications, swallowing and feeding, seating and mobility, postural care and pressure ulcer management, and chronic pain management principles to offer broad consultation with patients and families
- Experience with vehicle adaptations would be an asset
- Nonprofit experience preferred, including working with volunteer committees
- Must have the ability to travel throughout the U.S. and internationally throughout the year
- Must have the 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 Workspace
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The IFOPA is an equal employment opportunity employer and strives to comply with all applicable laws,
prohibiting discrimination based on race, color, creed, sex, age, national origin or ancestry, physical or mental disability, veteran status, marital status, etc., as well as any other category protected by federal, state, or local laws.
The job profile in no way states or implies that these are the only duties to be performed by the jobholder; the Family Services Coordinator will be required to follow instructions and perform other duties as requested by their supervisor. Essential elements may change when necessary.