The Registry Intern:
The FD/MAS Alliance is a unique nonprofit that serves the needs of people with fibrous dysplasia/McCune-Albright syndrome (FD/MAS) 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.
This is a part-time (between 10 and 20 hours per week), unpaid, remote internship position.
Candidate Requirements:
- Candidate must be able to schedule at least 10 hours a week during business hours (between the hours of 9 am and 6 pm EST, Monday – Friday).
- Candidate must be able to receive academic credit for the internship.
Responsibilities:
- 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 staff to disseminate study findings to study participants by presenting that information in an easy to comprehend manner.
- Work with staff to strategize and plan upcoming community outreach campaigns about the FD/MAS Patient Registry.
- Additional tasks as requested.
Qualifications:
- 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 the 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 communication skills, including firm mastery of spelling, grammar, and punctuation.
- Strong interest in health research and in improving the lives of people with chronic illness.
- The personal connection to fibrous dysplasia, McCune-Albright syndrome, or a related rare bone disease is a plus.
Candidate Requirements:
There is a rolling deadline for the internship program.
- Applicants for Fall Semester should apply by July 15th
- Applicants for Spring Semester should apply by October 15th
- Applicants for Summer should apply by April 15th
Your university likely has independent deadlines in order for you to receive credit for your internship (required). Contact your internship coordinator promptly if you are interested in completing an application.
Please send your resume and cover letter to info@fibrousdysplasia.org. Please use the subject line: FD/MAS Research Intern.
