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Job Title: Research Programs Manager
Job Number:
Organization: Fibrous Dysplasia Foundation
Posted: 7/2/2018
Type: Full-Time
Classification: Public Health - General
Industry: Non Profit / NGO
Number of Openings: 1
Location: Remote,      USA
Compensation: 50,000-60,000
Position Description: Manage the FD/MAS Patient Registry Program The FD/MAS Patient Registry is an IRB- approved project of the Fibrous Dysplasia Foundation. Launched in 2016, the FD/MAS Patient Registry is one of the largest datasets about FD/MAS patients worldwide, and growing every day. • Primary staff support to the Oversight Committee, including strategic development of meeting agendas, and preparation for monthly meetings (e.g. drafting new policies, documents and reports). • Primary liaison to IRB to communicate changes to project protocol, study design and project marketing/recruiting. • Serve as an encouraging and informative primary point of contact to patients and families interested in joining the patient registry research project by answering basic questions about the project, guiding patients and families through the online registration experience, and reporting any problems or recurring questions. • Shepherds researcher requests for datasets and recruiting assistance throughout the lifecycle of such requests, including answering applicant questions, coordinating Oversight Committee review, and fulfilling approved requests. • Other day-to-day registry operations, including management of interns and volunteers, and contributing to the development of new communications and engagement tactics for registry stakeholders. Manage and Support Other Important FDF Research Programs • Manage annual pilot grant lifecycle ($260,000+ in grants in 2018), including convening the Scientific Advisory Council to develop RFA language, communication with grant administration partners at UPenn, dissemination of funding opportunity to researcher community, identification of and communication with reviewers, collection and distribution of progress reports, and preparation of laymen-friendly cycle updates for the FD/MAS patient/family and donor communities. • Prepare content for the biannual FD/MAS Researcher and Clinician newsletter (e.g. recently published research of note, relevant funding opportunities, meeting information), and other content for distribution to the global audience of FD/MAS Researchers and Clinicians including mailings and web pages. Maintain and grow an up-to-date database of FD/MAS researchers and clinicians to facilitate dissemination. • Knowledgeably and professionally represent the research interests of the Fibrous Dysplasia Foundation in meetings with researchers, clinicians, therapeutic developers, advisers, patient advocacy groups and related stakeholders. • Support the operations of the Scientific Advisory Council, and its special projects, by coordinating its meetings, working with the Council Chair and Executive Director to collect, develop and distribute materials to support each meeting, and distributing accurate meeting minutes. • Support the operations of the Medical Advisory Council and its responsibilities to periodically review the accuracy of, develop new patient or clinician education resources, and improve the physician database. Collaborate with other staff to develop FDF educational programming for patients and families. • Provide support to enable the FDF to meet responsibilities and opportunities presented by the new FD/MAS International Consortium, including drafting and editing materials, and coordinating select consortium initiatives as requested.

Develop New FDF Research Programs to Address High-Priority Needs • Work closely with key advisors and Executive Director to develop requirements, project plans, contracts, and reporting systems for new FDF research initiatives. Work with other staff to develop accurate supporting materials related to these initiatives for marketing and fundraising purposes. Potential new programs may include development of supplemental international research grant programs, and initiatives related to increasing researcher access to high- quality biospecimens, preclinical disease models, and clinical data. • Additional projects as requested.

Qualifications: • Bachelors in a science/public health discipline. Masters or PhD is a significant plus, as are certifications relevant to clinical research. • Minimum 2 years related work experience. • Candidate should have a high level of computer literacy, including ability to conduct internet research, and confidence using Google Apps, Dropbox, Skype, Word, Excel, and Powerpoint. The candidate must be willing and excited to learn and use computer applications they haven’t used in the past, such as new data visualization tools, an uncommon survey tool and similar other applications. • Strong ability to establish and maintain effective working relationships. • Experience managing multiple concurrent projects and programs. • Given the remote nature of the position, candidates should be self- motivated and able to work independently. • Personal connection to fibrous dysplasia, McCune-Albright syndrome, cherubism, or a related rare bone disease is a plus. • Other languages helpful, but not required.

Organization Description: The Fibrous Dysplasia Foundation (FDF) is a patient-centric and family-founded nonprofit organization that serves the fibrous dysplasia and McCune-Albright syndrome (FD/MAS) patient community through programs of research, education and support. There are no FDA-approved treatments to reverse, stop or slow the progression of FD/MAS-related bone disease, and patients living with FD/MAS struggle to find medical care that is based on up-to-date clinical research findings. The ideal candidate for this position wishes to apply understanding of basic, preclinical/translational and clinical research to real-world problems, and is highly motivated to achieve progress for an underserved, rare disease community of patients and families, so that patients and families can receive better care, better treatments, and ultimately, a cure for FD/MAS. Candidates can expect to enjoy a collaborative, empowering and exciting work environment, where your everyday responsibilities make a difference for thousands of people around the world. This position reports to the Executive Director.

Closing Date: 10/2/2018
Desired Starting Date:
Contact Name: Deanna Portero,  Research Programs Manager
Contact Location: 2885 Sanford Ave SW #40754

Grandville   MI  49418
United States
Contact Location: 2885 Sanford Ave SW #40754
  Grandville   MI  49418
  United States
Contact Phone: 9175132169 
Contact Fax:
Contact Email:
Web Address:
How to Apply: Application instructions • Please send your resume (CVs also acceptable), and cover letter to Use the subject line: Research Programs Manager • Deadline for applications is 9:00am EDT, July 23rd, 2018. Applicants encouraged to submit applications as early as possible.

Additional Information: Basic position details: • 40 hours per week/full-time. Not eligible for overtime. Typical business hours preferred, but moderate accommodations are possible. • Remote position, but DC/Maryland/Virginia based candidates a plus. Stipends provided for use of telephone, internet. • Up to 10% travel required • Physical requirements include sitting and keyboard work for long periods of time, and occasionally bending, lifting and carrying approximately 30 pounds. • Salary $50-60K, based on experience. Benefits to include paid federal holidays, worker’s compensation coverage, short-term and long-term disability insurance, 401K savings plan and 15 days paid leave per year. Health benefits not included at this time. FDF has a non-discrimination policy and encourages all interested and qualified applicants to apply regardless of race, gender, sexual orientation, gender identity, religion, age, disability, or other status protected by applicable law.

Web Site Delete Date: 7/23/2018