Patient Programs Coordinator

The Progeria Research Foundation (PRF) is the only organization in the world dedicated to discovering treatments and the cure for Hutchinson-Gilford Progeria Syndrome and its aging-related disorders, including heart disease, through medical research, outreach and education. Progeria is a rare, fatal, “rapid-aging” disease that afflicts children worldwide who, without treatment, die of heart disease at an average age of 14.6 years. Please visit our website to learn more about Progeria and PRF at www.progeriaresearch.org. Be part of our exciting mission to find the cure for these inspiring children!

Who We Seek

A passionate, enthusiastic, analytical, detail-oriented, and self-motivated team player with a background in the sciences, ready to join a fast-paced team serving an international and multi-lingual patient community through PRF programs, facilitated by frequent email, phone, and video communication.

 Position Summary

The successful candidate must be energetic and enjoy working on a small team that is mission- and result-driven. The ideal candidate must be able to independently multi-task effectively, have excellent verbal and written communication skills, the ability to maintain confidentiality and exercise good judgment in a variety of situations, have strong administrative, project management and organizational skills, and maintain a balance among multiple priorities.

Responsibilities

• Track potential new patient inquiries and follow patient family/physician communications through either confirmation of Progeria cases, referrals to appropriate colleagues, or other changes in status
• Keep records of children and young adults with Progeria and facilitate the team’s communication to the Progeria community through planning and execution of phone and video calls and drafting or sending of emails
• With appropriate training, consent children and young adults with Progeria and their families to PRF’s research programs and accurately track program enrollment numbers
• Collaborate with the Research Laboratory Coordinator to facilitate distribution and collection of diagnostic testing and other blood collection kits to and from families and researchers throughout the world
• Offer support to physicians from around the world registering for a drug access program and track progress and participation in said program
• Participate in weekly meetings with internal team to discuss status of open cases and to-dos and with external team at Boston Children’s Hospital to assist with clinical trial preparations and exchange updates
• Prepare reports and data pulls, research specific genetic mutations and other topics in the field, participate in the writing of scientific manuscripts, and provide administrative and research support on additional projects, as directed by the Medical Director
• Provide assistance to colleagues and contribute to team effort through other tasks, as needed

 Qualifications

•  Master of Science (MS) in a relevant field required
• Minimum of 3 years experience working in a coordinator-type role preferred
• Experience working with a culturally, economically, lingually, and/or geographically diverse population strongly preferred
• Experience in research, scientific writing, and publication process strongly preferred
• Excellent verbal and written communication skills
• Strong attention to detail and organizational skills
• Flexible team player, strong multi-tasker
• Desire to learn and to grow in this role and with the Foundation
• Proficient in appropriate software including but not limited to: Microsoft Office Suite, Adobe Suite, video conferencing software

Benefits

• Compensation: commensurate with experience
• Medical and Dental Insurance
• Paid Time Off
• Retirement plan available with company contribution after 1 year

Please email cover letter and resume to admin@progeriaresearch.org