The Fibrous Dysplasia Foundation is a unique nonprofit that serves the needs of people with fibrous dysplasia, McCune-Albright syndrome (FD/MAS), cherubism and related diseases through programs of research, education and support. FD/MAS is a poorly understood disease that affects the bone, endocrine system and skin.
The FD/MAS Patient Registry is an exciting and innovative research program that allows patients affected by this rare disease to share their medical history and personal experiences in order to accelerate research. While the project only opened enrollment in 2016, the FD/MAS Patient Registry is already one of the most valuable FD/MAS datasets worldwide.
The Research Intern will gain valuable experience in survey-based health research by facilitating FD/MAS Patient Registry participant enrollment, participant retention, data analysis, and community engagement.
This is a part-time (between 10 and 20 hours per week), unpaid, remote internship opportunity, although candidates in the Washington, DC area will have the opportunity to meet with staff in-person.
- Candidate must be able to schedule at least 10 hours a week during business hours (between the hours of 9am and 6pm EST, Monday – Friday).
- Candidate must be able to receive academic credit for the internship.
- Assist families who are interested in joining the patient registry by accurately answering basic questions about the project over email, phone and social media.
- Helpfully guide patients and families through the study enrollment process, and reporting any problems or recurring questions to supervisors.
- Encourage study participants to complete or update their scheduled study responses in a positive and professional manner.
- Conduct data analysis to answer FD/MAS research questions.
- Work with FDF staff to disseminate study findings to study participants by presenting that information in an easy to comprehend manner.
- Work with FDF to strategize and plan upcoming community outreach campaigns about the FD/MAS Patient Registry.
- Additional tasks as requested.
- Pursuing a bachelor’s degree in a relevant major, such as public health, biology, information systems or sociology.
- Previous experience as a research assistant is a major plus.
- Previous work or volunteer experience at a health condition centric nonprofit or a medical environment is a major plus.
- Must be excited to learn and use web-based applications they haven’t used in the past.
- Experience conducting data analysis in Excel or a more powerful data analysis tool.
- Candidate should have a high level of computer literacy, including ability to conduct internet research, and confidence using Google Apps, Dropbox, Skype, Word, and Excel.
- Given the remote nature of the position, candidates should be self-motivated and able to work independently.
- Empathy, sensitivity and professionalism are essential. You must be able to handle and protect confidential and sensitive information with integrity.
- Excellent communications skills, including firm mastery of spelling, grammar, and punctuation.
- Strong interest in health research and in improving the lives of people with chronic illness.
- Personal connection to fibrous dysplasia, McCune-Albright syndrome, cherubism, or a related rare bone disease is a plus.
Please send your resume, cover letter, and three references to firstname.lastname@example.org. Please use the subject line: FD/MAS Research Intern.