Job Announcement – Genetic Counselor and Registry Coordinator
The Alpha-1 Foundation is committed to finding a cure for Alpha-1 Antitrypsin Deficiency and improving the lives of people affected by Alpha-1 worldwide. This full-time position is an exciting opportunity to educate and support patients and families while building and growing our National Patient Registries. Please review the job description below and if you are interested, please send a resume, cover letter, and salary requirements to email@example.com.
The Genetic Counselor and Registry Coordinator will oversee and administer genetic education, counseling, and psychological support programs for patients and/or families. While promoting the activities and functions of the National Patient Registry (NPR), this research role will work to improve care and develop new and better therapies for individuals suffering from Alpha-1 Antitrypsin Deficiency.
Provides telephone/call center counseling to patients and family members.
Discusses testing options and the associated risks, benefits, and limitations with patients, families, and other healthcare providers.
Interprets and communicates genetic test results to families and healthcare professionals.
Serves as a community liaison for presentations and outreach activities for specific programs.
Assists in the development and preparation of promotional and educational materials as well as various other media.
Gathers and assembles clinical data for research purposes.
May Publish and present clinical genetics information to contribute to genetics literature.
Attends educational conferences to maintain appropriate continuing education and keep abreast of developments in genetics and genomics.
Coordinates and manages the daily operations of national patient registries.
Develops and maintains clinical databases.
Serves as a resource for institutional and patient partners.
Assists in preparation of proposals for funding from corporate sponsors.
Assists in recruiting program partners and patients.
Assists in facilitating workshops, webinars, meetings, or conferences.
Provides support by compiling medical related reports for medical staff, researchers, and administrative staff.
Prepares periodic reports and records on program activities, progress, status, or other special reports for management.
Evaluates program effectiveness to develop improved methods and evaluate methodology to analyzes results and take appropriate action.
Assists in the production of the Annual National Patient Registry Report.
Assists in the planning and revising of departmental procedures.
Participates in national and regional studies.
Provides information about inheritance, testing, management, prevention, resources, and research.
Administers Consents to individuals.
Other responsibilities as assigned.
M.S. in Genetic Counseling (or equivalent degree) from an Accreditation Council for Genetic Counseling (ACGC)-accredited genetic counseling program.
Candidate must be certified as a Genetic Counselor (CGC) by the American Board of Medical Genetics (ABMG) or American Board of Genetic Counseling (ABGC) within one year of hire.
The Alpha-1 Foundation prefers that the employee be based in south Florida
Qualifications and Skills
Genetic counselors must be able to simplify complex findings so that people understand them.
Must be able to work well with a team of medical and lay personnel and have an interest in research.
Previous experience in patient registries is very desirable.
Ability to travel.
Exemplary verbal and written communication skills.
Well-developed organizational and time-management skills.
Self-starting and goal-oriented.
Team-oriented philosophy includes working with internal and external stakeholders.
Please submit a letter of interest with your resume.