Genetic Counselor Jobs

Organization: Aicardi Goutieres Syndrome Advocacy Association - AGSAA https://agsaa.org/

Mission and Vision: Join a dynamic global coalition of dedicated parent advocates, clinicians, researchers, and scientists united to advance science, research, and compassionate support for families living with Aicardi-Goutières Syndrome (AGS). The AGSAA is a 501c3 nonprofit foundation committed to improving the lives of individuals and families affected by AGS and those yet to be diagnosed, using our learned experience and honoring those before us. Our sense of urgency drives us to rescue patient potential and preserve the quality of life through accelerated research, timely emotional outreach, and evolving clinical care recommendations.

Position Overview: We are seeking a compassionate and knowledgeable Genetic Counselor to provide part-time support (8-10 hours per week) remotely for 6 months, with the opportunity to extend to 12 months and beyond. As a Genetic Counselor, you will play a vital role in enhancing the lives of families impacted by AGS by offering insightful genetic counseling services, helping them understand the condition's intricacies, developing support materials, and guiding our community through available resources.

Key Responsibilities:

• Assist families in understanding complex medical information, test results, and treatment options related to AGS.
• Participate in virtual meetings and discussions with the organization's multidisciplinary team to share insights and contribute to improving patient care and support.
• Collaborate with clinicians, researchers, and parent advocates to stay updated on the latest developments in AGS research, treatment, and clinical care recommendations.
• Assist with grant opportunities and identifying community resources.
• Provide remote onboarding and counseling to individuals and families affected by Aicardi-Goutières Syndrome.
• Assist in facilitating the AGS ECHO program ( https://agsaa.org/echo), an effort to build a collaborative network of healthcare providers treating AGS.
• Offer empathetic and informative support to families seeking clarity on genetic aspects, inheritance patterns, and potential risks.
• Establish an intake protocol for newly diagnosed patients to provide timely information about treatment, to connect with others for support, and to encourage participation in the AGS patient registry, contact registry, and research and clinical trial opportunities.
• Contribute to creating educational materials and resources to empower families with AGS-related knowledge.

Qualifications:

• Commitment to the organization's mission and values, demonstrating a genuine desire to positively impact the lives of individuals and families affected by AGS.
• Strong understanding of genetics, inheritance patterns, and genetic testing methodologies.
• Comfortable working remotely and effectively managing virtual interactions.
• Master's degree in Genetic Counseling from an accredited program.
• Familiarity with Aicardi-Goutières Syndrome or similar genetic conditions is a plus.
• Ability to convey complex medical information in an understandable and supportive manner.
• Excellent communication skills, both written and verbal, with a compassionate and empathetic approach.
• Certification or eligibility for certification by the American Board of Genetic Counseling (ABGC) or the American Board of Medical Genetics and Genomics (ABMGG).