About NORD

The National Organization for Rare Disorders (NORD) is the leading independent nonprofit organization representing all patients and families affected by rare diseases. Come join our team and be part of the transformation and acceleration of research, and the development of evidence-based policy, care support and awareness campaigns to improve the lives of the 30 million Americans impacted by rare diseases. We offer a competitive compensation and benefits package along with a collaborative work atmosphere, opportunities for career growth and development, and flexible telecommuting options. Follow NORD at www.rarediseases.org/ and on Twitter at @RareDiseases.

Position Summary

NORD has an exciting opportunity for a Research Assistant. The Research Assistant will work collaboratively with the IAMRARE Team to support the IAMRARE^TM Program to facilitate patient-powered natural history studies. These studies are transforming how patients and caregivers inform and shape medical research and translational science for rare diseases. NORDs IAMRARE Program includes an easy-to-use system that allows organizations to launch a high-quality, customized study to collect the data needed to define disease progression and advance product development. This critical information is lacking for numerous rare diseases due to relatively small patient populations and barriers to many funding opportunities for rare disease researchers. By filling knowledge gaps, and promoting equitable and sustained progress on rare disease research, NORD aims to improve clinical trial design, advance the development of new therapies, and generate data across all rare diseases in order to mobilize resources and better address the needs of the rare disease community.

Essential Duties and Responsibilities

The Research Coordinator will lead day-to-day operations of the registry program, including liaising with prospective and current community partners, implementing studies (protocols, survey design), and developing specs and requirements for system improvements and new features. Coordinate and manage the day-to-day operations and implementation of the IAMRARE Program.

Specific tasks include, but are not limited to:

• Provision of customer support and training to study sponsors and participants to resolve technical issues and questions;
• Support the preparation of study protocols, consent forms and study websites;
• Building of new surveys on study platform;
• QA/QC testing of surveys and platform features;
• Management of time efficiently and independently, meet deadlines, initiate and follow through on tasks to ensure that goals and objectives specified for various programs are accomplished;
• Manage internal and external meeting including scheduling, communications and notetaking;
• Assist in facilitating workshops, webinars, meetings or conferences; coordinate logistics, scheduling and participant communications;

Performs other duties and functions as assigned.

Education/Experience

Bachelors degree in a relevant field, e.g. Biology, Public Health;

1 - 2 years of relevant experience;

Previous experience in human subjects research and IRBs desirable;

Experience working in a research or academic environment preferred.

Knowledge, Skills and Abilities

Excellent project management skills and attention to detail;

Proven ability to successfully manage data-related projects on time;

Excellent verbal and written communication skills;

Superior organizational and time management skills;

Demonstrable empathy for people with rare diseases;

Excellent technical computer skills, competent with Microsoft Office products including Outlook, Teams, Word, Excel and PowerPoint, project management software, and survey software (e.g. SurveyMonkey, RedCap); good problem solving and interpersonal skills.

Eagerness to learn and join a collaborative, dedicated, and fun team!

Working Conditions

This is a fully remote U.S. based position.

Essential functions can be performed at home or in an office setting with a low level of noise. Reasonable accommodations may be made to enable individuals with disabilities to perform the essential functions. Occasional travel is required.

NORD is an equal opportunity employer. All applicants will be considered for employment without attention to race, color, religion, sex, sexual orientation, gender identity, national origin, veteran or disability status.

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