The Information and Referral (I&R) team services the Epilepsy and Seizures 24/7 Helpline between 9:00 AM and 5:00 PM Eastern Time, Monday through Friday. As an essential I&R team member, the Information Specialist responds daily to general epilepsy-related inquiries (primarily from the community, as well as from Epilepsy Foundation affiliates and staff) received via phone, inter-departmental transfers, fax, e-mail, online groups and forums, social media (Twitter, Facebook), walk-ins, and traditional mail. This position involves obtaining sensitive information from requestors through professional assessment techniques and providing the most appropriate responses utilizing approved Foundation materials, databases, and referral resources. The Information Specialist must keep abreast of developments in the field of epilepsy by reading pertinent publications, performing online resource searches, attending various professional conferences and workshops, and by participating in health fairs as an exhibitor. The Information Specialist is required to implement information and referral best practices following the Alliance of Information and Referral Services (AIRS) national standards. This position reports to the Director of Information & Referral.


  • Provides concise, accurate, and timely information in response to all inquiries received via phone, email, written correspondence, web posts, and online communities.
  • Respond to all inquiries professionally and courteously.
  • Effectively searches various databases to provide accurate and appropriate responses to inquiries.
  • Follows specified best-practice guidelines established by the Foundation's medical and legal advisors and the Alliance for Information and Referral Services for the provision of information and referral services.
  • Responds to inquiries including, but not limited to, the following topics: medical assistance and referrals to specialists, treatment options, financial assistance, vocational training, employment assistance, psychosocial needs and support groups, legal rights issues and advocacy, and continuing education.
  • Consistently provides appropriate referrals to community resources, including Epilepsy Foundation affiliates, that best meet the client's needs.
  • Monitors online community and forum sites and provides concise, accurate, and timely information to sensitive questions.
  • Provides technical assistance to support Foundation local offices as they provide information and referral services at the local level.
  • Enters all essential demographic information into the approved agency database to facilitate rapid, accurate, comprehensive statistical reporting and data transfer.
  • Assists with maintaining and updating all resource referral records.
  • Assists with researching new referral resources, both in the U.S. and internationally, with a special focus on resources in underserved and unaffiliated territories.
  • Reviews epilepsy-related news items, newsletters, and journal articles directed to information staff, to acquire up-to-date knowledge and enhance their ability to address new client-initiated questions
  • Attends content-specific conferences, symposia, or technical training programs for professional development.
  • Alerts appropriate department of media activity related to epilepsy about which the Foundation has not been notified.
  • Provides crisis and suicide intervention assessment and support with guidance from supervisor.
  • Conducts daily mailing of consumer packets with relevant topic-specific educational materials.
  • Provides follow-up to clients to better support their quality of life and ability to utilize the information and referral resources provided.
  • Assists with our annual outcome assessment follow up process.
  • Pursues and maintains certification as a Community Resource Specialist (formerly Certified Information & Referral Specialist) through the Alliance for Information and Referral Services (AIRS).
  • Performs other duties, including other special projects assigned by supervisory staff, as assigned.

Specific Information Specialist responsibilities may also include:

  • Overseeing the J. Kiffin Penry Travel Assistance Fund through facilitating the application process and responding to consumer inquiries.
  • Maintains an updated list of Patient Assistance Program resources. This involves the updating and testing of phone numbers and websites.
  • Coordination of exhibits for national office staff, including the shipping of relevant displays and educational materials to exhibit sites.

Requirements, Education, and Experience

  • Knowledge of or ability to learn about epilepsy, including the nature of the disease, symptoms, and treatment and how persons afflicted with the disease, and their families, can best accept and deal with it.
  • Knowledge of health data information sources and their use.
  • Demonstrated experience or the ability to respond effectively to inquiries from persons with epilepsy, their family members, health professionals, and others, regarding epilepsy.
  • Similar experience or ability to utilize health data information sources efficiently.
  • Exercises tact and sensitivity in dealing with persons making inquiries about epilepsy.
  • Experience in information and referral or crisis intervention strongly preferred, but not required.
  • Certification as a Community Resource Specialist (formerly Certified Information and Referral Specialist) through AIRS is strongly preferred, but not required.
  • Bachelor's degree in social work, nursing, or other social service field is preferred.

Required Competencies

To perform the job successfully, an individual should demonstrate the following competencies to perform the essential functions of this position:

  • Client Focus – Provides service excellence to and maintains internal and external clients.
  • Acting with Empathy and Compassion – Genuinely seeks to understand and respect others' perspectives, especially in difficult and complex situations.
  • Teamwork – Acts as an effective, contributing team member and works collaboratively with various teams; is accessible to staff and volunteers; provides regular performance feedback; develops skills; and encourages growth in others.
  • Fostering Communication - Listens and communicates openly, honestly, and respectfully with different audiences, promoting dialogue and building consensus.
  • Ensuring Accountability – Holds yourself to high standards of accountability and delivers your work in keeping with commitments to others.
  • Problem Solving – Identifies problems and the solutions to them.


Authored By: 
Human Resources
Authored Date: 
Reviewed By: 
Devan Ferguson
Thursday, January 2, 2020