Core work involves engaging with higher-risk individuals, or those in crisis, providing assessment, supportive listening referrals to community resources and advocacy support. Conducts daily follow up with at-risk consumers in support of ongoing outcome evaluation protocols. Maintains special knowledge of referral resources in unaffiliated territories, engaging in patient advocacy support in these territories as needed. Provides backup information and referral support as needed, responding daily to consumer, professional, affiliate and internal inquiries received via the toll-free Helpline, inter-departmental transfers, e-mail, online communities, walk-ins and postal mail correspondence. All work involves obtaining sensitive information from consumers, assessing needs, and providing the most appropriate responses using approved Foundation materials and referral resources. Keeps abreast of developments in the field of epilepsy by reading relevant publications, doing online resource searches, and attending professional conferences and workshops.


At-Risk Consumer Advocacy and Follow Up

  • Conducts follow-up with consumers who are at risk or in crisis to support them in effectively utilizing the information and referral resources that have been provided and to help improve their quality of life. This involves supportive listening, assessments, appropriate intervention, referrals and advocacy support.
  • Takes primary responsibility for implementing the Helpline’s quality assurance and outcome evaluation protocol by conducting daily follow up and advocacy support calls with a random sampling of Helpline callers.
  • Provides backup support for consumer emergencies, including suicidal callers (with supervisor guidance), conducting appropriate interventions and facilitating referrals for additional support as needed.
  • Conducts intake and provides first line bereavement support to individuals who have lost someone to epilepsy and seizures.
  • Maintains working knowledge of key community referral resources in up to five (5) areas of the country that do not have an independent Foundation affiliate. Effectively facilitates referrals to these community resources and advocates for consumer needs when needed.

Information and Referral

  • Responds to inquiries received via toll-free Helpline, email, online forums and communities, inter-department transfers, walk-ins, postal mail, providing concise, accurate and timely information as needed
  • Applies active listening skills and conducts assessments of caller/inquirer needs.
  • Adheres to Foundation’s information and referral policies related to customer service, data collection, assessment, referral, and confidentiality
  • Searches approved and vetted informational resources, providing optimal responses to consumer inquiries.
  • Searches the referral resources database, providing community resource referrals that best meet the inquirer’s needs.
  • Supports Communications Department with responding to social media posts and inquires.
  • Enters all essential inquirer demographic information into the consumer inquiry database in order to facilitate rapid, accurate, and comprehensive statistical reporting and data transfer;
  • Maintains and updates a network of contacts, medical resources, and community services pertaining to epilepsy.
  • Helps to monitor online community sites and posts concise, accurate and timely responses.
  • Provides professional guidance and support to affiliate staff who provide information and referral services at the local level.
  • 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 in order to remain up-to-date on epilepsy information and best practices in the provision of information and referral services
  • Notifies the Foundation’s Communications Department when consumers report epilepsy-related media activity about which the Foundation is unaware and helps define the best response.
  • Compiles and sends occasional mailings of consumer packets with relevant topic-specific educational materials
  • Participates in health fairs as an exhibitor to promote the Foundation and the Helpline services
  • Undertakes special projects as assigned by supervisory staff.
  • Pursues and maintains a Certified Information Specialist (CIRS) certification through the Alliance for Information and Referral Services (AIRS).


  • BA degree in social work or counseling, LPN or RN in nursing, or 4-year degree in another social service field.
  • Minimum 3 years experience providing information and referral services, care coordination, patient education, direct advocacy support or related services.
  • Experience working with diverse populations, including those with disabilities.


  • Knowledge of information and referral best practices
  • Basic knowledge of epilepsy, including nature of the disease, symptoms, and treatment and how persons afflicted with the disease, and their families, can best accept and deal with it.
  • Ability to respond effectively to inquiries from persons with epilepsy, their family members, health professionals, and others, regarding epilepsy.
  • Utilize health data information sources efficiently.
  • Exercise tact and sensitivity in dealing with persons making inquiries about epilepsy.
  • Certified Information and Referral Specialist (CIRS) certification desired, but not required.


Interested candidates should submit a cover letter and resume to Please include salary requirement. No phone calls please.