Part Time Genetic Counselor - Family Care & Community Education

The MED13L Foundation is a patient-led nonprofit working to turn family stories into science, and science into treatments. We unite families, clinicians, researchers, and industry partners to accelerate understanding of MED13L Syndrome, improve care across the lifespan, and build the community engagement, data, and partnerships needed for therapeutic development.

The Role

We are seeking a board-certified genetic counselor to help the MED13L community better understand the condition. This role has three focuses: developing family care and medical/genetic education materials; offering general, educational sessions that help families understand MED13L Syndrome and prepare for conversations with their own care and genetic-testing providers; and hosting webinars and information-driven discussions for the community.

Scope.

This is an educational and resource-development role. It does not include clinical genetic counseling, and the counselor does not provide diagnosis, medical advice, interpretation of an individual's genetic results, recurrence-risk assessment, or any other individualized clinical service. No counselor-patient relationship is created through this role. Family sessions are general and educational, helping families understand publicly available information about MED13L Syndrome, organize their questions, and identify the right professionals to contact. All individualized questions are directed to the family's own clinical genetics team and treating providers, and the counselor helps maintain clear referral pathways to those providers.

Hours. This is a focused engagement of approximately 5 hours per week. Priorities are set quarterly with the Chief Scientific Officer so the work stays realistic, sequenced, and high-impact.

Core Responsibilities

1. Family Care & Medical/Genetic Materials

• Develop and maintain plain-language family resources: genetics and testing FAQs, a family-planning guide, a genotype-phenotype explainer, and the MED13L Medical Care Considerations resource across childhood, adolescence, and adulthood.
• Translate research updates, published findings, and the disease concept model into accurate, family-friendly materials, without overstating preliminary results.
• Establish an annual content-review process with version dates, sources, medical DISCLAIMERS, and defined clinical reviewers.

2. Family Education Sessions

• Offer general, educational sessions on how genetic conditions like MED13L Syndrome work and what the testing and care journey typically involves using clear, balanced language and general examples, not interpretation of any individual's results.
• Help families prepare questions for, and connect with, their own clinical genetics and care teams, and point them to appropriate resources and referral pathways.
• Identify recurring questions, care gaps, and barriers to research participation, and convert them into new resources or recommendations for Foundation leadership.

3. Community Webinars & Information-Driven Discussions

• Host a recurring virtual education series for the MED13L community, shaped by current family needs and the Foundation's research roadmap.
• Lead or co-facilitate sessions with clinicians, researchers, or family members, each including a plain-language presentation, moderated Q&A, and a durable resource or recording.
• Maintain clear boundaries around individualized medical advice, directing families to their clinical teams.

Future Involvement: MED Clinic

Looking ahead, the counselor will have the opportunity to contribute to the MED Clinic the Foundation is developing in collaboration with Cincinnati Children's Hospital which will support family education, care resources, and coordination as this multidisciplinary clinic takes shape.

Genetics & Family Planning: Inheritance, recurrence risk, reproductive options, and questions to ask a clinical genetics provider.

Understanding Variants & Genotype-Phenotype: What a genetic report can and cannot predict, including uncertainty and variability within MED13L Syndrome.

Building a MED13L Care Team Across the Lifespan: Specialists, therapies, care coordination, transitions, and adult care.

MED13L: What We Know & How We Learn More:

Current evidence, major gaps, and the role of natural history, registries, and participation.

Qualifications Required

• Master's degree in genetic counseling and current ABGC certification (or an equivalent credential appropriate to the counselor's jurisdiction).
• Excellent written and verbal communication, including the ability to explain uncertainty and complex genetics to nonclinical audiences.
• Strong content-development skills, turning dense scientific material into clear, accurate, family-friendly resources.
• Sound judgment regarding scope of practice, informed consent, privacy, boundaries, and referral to treating clinicians.
• Empathetic, family-centered, and culturally responsive approach.

Preferred

• Experience with pediatric, neurodevelopmental, or rare genetic conditions, and with individuals who use AAC or have intellectual disability.
• Experience in patient education, community engagement, or rare-disease programming.
• Comfort presenting to families and clinicians via webinars.

Additional Information

• Part-time consulting role
• 5-10 hours per week, flexing around major community and research milestones
• $50 - $60 an hour, based on experience.
• 1099 position
• Reports to Chief Scientific Officer
• Remote; periodic travel as mutually agreed
• Terms, deliverables, and response-time expectations will be set out in a written consulting agreement. Materials created for the Foundation under this engagement remain Foundation property.

What We Offer

• Meaningful work with an engaged global rare-disease community.
• A substantive voice in how MED13L Syndrome is understood, communicated, and prepared for care and therapeutic development.
• Opportunity to help shape the Foundation's family-education program and its future MED Clinic collaboration.
• A flexible structure and the opportunity to grow the role with Foundation leadership.

Compliance & Scope-of-Practice Disclaimer

This is a non-clinical, educational consulting engagement. It does not constitute the practice of genetic counseling, medicine, or any licensed healthcare service, and it does not create a counselor-patient, provider-patient, or other clinical relationship. The genetic counselor engaged in this role does not provide diagnosis, medical or treatment advice, interpretation of any individual's genetic test results, recurrence-risk assessment, or other individualized clinical services; all such questions are referred to the family's own clinical genetics team and treating providers. The counselor is responsible for practicing within the scope of their license/certification (e.g., ABGC/ACGC) and the laws and regulations of their applicable jurisdiction, and for maintaining professional liability coverage as appropriate. All Foundation educational materials are general in nature, are not a substitute for professional medical advice, and include their own DISCLAIMERS. This document is a role description and not an offer of employment or a contract; final terms are governed by a written consulting agreement.