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Multiple locations
Rockville, Maryland, United States of America
Fairfax, Virginia, United States of America
Richmond, Virginia, United States of America
JOB #R2104784

Genetic and Rare Disease (GARD) Information Specialist

ICF seeks a Tier 2 Information Specialist to support our National Center for Advancing Translational Sciences (NCATS) / Office of Rare Diseases Research (ORDR) client. ORDR coordinates and supports rare disease research, responds to research opportunities for rare diseases, and provides information on rare diseases. The GARD Contact Center serves as a key resource for patients with rare diseases, their caregivers, and healthcare providers involved in their care.

Position Summary:Genetic and Rare Diseases Information Specialists are responsible for answering phone calls and written inquiries received by the GARD Contact Center. These inquiries, received in English and Spanish, receive customized responses based on the needs of each patient. Tier 2 staff handle GARD’s more complex inquiries, working closely with Tier 1 staff to ensure a warm-hand-off when more comprehensive of specialized services are required. They may be required to assess the social, psychological, cultural, environmental, and financial needs of each inquirer. Tier 2 staff utilize advanced research and critical assessment skills to identify and vet health information and resources. They may also offer guidance as patients navigate their healthcare journey and utilize advanced writing and communication skills to address needs.

Key Responsibilities:

  • Answer phone calls and written inquiries
  • Provide support, education, information, referrals and follow-up to patients, families, and professionals seeking assistance
  • Function as a mentor providing guidance in service delivery and training of other staff
  • Utilize crisis support and counseling techniques to serve callers in distress
  • Effectively manage queue of call and email communications
  • Document patient/customer interactions and respond to all requests within 5 business days
  • Attend trainings to increase relevant knowledge and skills
  • Perform other duties and functions as assigned

Professional Skills:

  • Excellent communication, writing, interpersonal, and listening skills
  • A friendly and professional demeanor
  • Ability to effectively communicate via telephone and email with patients, caregivers, healthcare providers, and researchers
  • Ability to work both independently and as part of a team
  • Ability to handle multiple tasks simultaneously and shift priority as directed
  • Strong passion for the rare disease community
  • Adaptable and responsive to different audiences
  • Highly motivated, regularly demonstrates initiative, and good time-management skills

Basic Qualifications:

Must have sufficient knowledge and skills to assess the needs of the inquirer, identify appropriate resources, and effectively and accurately communicate health information.

  • Completion of graduate coursework in a biomedical science, social work, or related field
  • At least two years’ experience in a customer service setting, preferably in a healthcare, advocacy, or patient facing environment
  • Bilingual preferred
  • Familiarity with rare disease resources, knowledge of how to access them, and ability to conduct literature reviews
  • Training in health literacy, plain language, and culture and communication 
  • Availability to work afternoons
  • Experience using SalesForce (or other customer management software)
  • General computer skills with a proficiency in Microsoft Word, Excel, PowerPoint, and Outlook
  • Familiar with online tools for team communication (Slack, WebEx, Zoom, Teams)

Working at ICF

Working at ICF means applying a passion for meaningful work with intellectual rigor to help solve the leading issues of our day. Smart, compassionate, innovative, committed, ICF employees tackle unprecedented challenges to benefit people, businesses, and governments around the globe. We believe in collaboration, mutual respect, open communication, and opportunity for growth. If you’re seeking to make a difference in the world, visit to find your next career. ICF—together for tomorrow.

We can only solve the world's toughest challenges by building an inclusive workplace that allows everyone to thrive. We are an equal opportunity employer, committed to hiring regardless of any protected characteristic, such as race, ethnicity, national origin, color, sex, gender identity/expression, sexual orientation, religion, age, disability status, or military/veteran status. Together, our employees are empowered to share their expertise and collaborate with others to achieve personal and professional goals. For more information, please read our EEO & AA policy.

COVID-19 Policy: New or prospective U.S. employees must provide proof of complete vaccination on the date of their commencement of employment. If selected for employment, you will provide proof of your full vaccination status, defined as vaccinated two weeks after receiving the requisite number of doses of a COVID-19 vaccine approved or authorized for emergency use by the FDA.

Reasonable Accommodations are available, including, but not limited to, for disabled veterans, individuals with disabilities, and individuals with sincerely held religious beliefs, in all phases of the application and employment process. To request an accommodation please email and we will be happy to assist. All information you provide will be kept confidential and will be used only to the extent required to provide needed reasonable accommodations. Read more about non-discrimination:  EEO is the law and  Pay Transparency Statement.

Rockville, MD (MD18)

Medical Writing

Who is ICF?

A global consulting services company with +7,000 people across +70 countries, but we are not your typical consultants.

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Join our talent network

ICF is growing, and we add new open roles to our site regularly. If you're waiting for that perfect opportunity at ICF or want an inside look at what it's like to do world-changing work, join our talent network to stay updated.

Join our talent network

ICF is growing, and we add new open roles to our site regularly. If you're waiting for that perfect opportunity at ICF or want an inside look at what it's like to do world-changing work, join our talent network to stay updated.