GC Connexons
A RareLab Pilot Program
GC Connexons
Empowering rare disease communities with the expertise of genetic counselor interns.
Most rare diseases are caused by genetic mutations. Patients and families benefit from knowing the results of genetic testing and from understanding the genetics of their specific conditions. While this information can be complex, receiving this education provides some understanding for families learning to live with a rare disease. Of significant note are new therapies and gene therapies moving through clinical trials and becoming more available for patients. Industry, clinical and patient advocacy organizations who support rare disease families have an obligation to provide as much education as needed for the family to feel they have adequate information to make empowered and informed decisions.
Rare disease patient organizations are critical, providing essential education, advocacy and support to patient families. However, they often operate with limited staff, funding and resources.
Genetic counselors (GCs) are experts in genetics and counseling, specializing in interpreting genetic tests and communicating complex genetic information. Traditionally, genetic counselors work in clinical settings, but there is a growing need for their expertise at rare disease patient organizations due to advancements in diagnostic technologies and gene therapies. Genetic counselors are taught to educate patients. They can help patients understand the genetic aspects of their conditions, the potential benefits of specific drugs, and the importance of adhering to treatment plans, leading to better patient compliance and outcomes.
Most genetic counselor graduate programs do not have established relationships with patient organizations to facilitate internships, allowing for student professional development but it is sorely needed.
Patient Organizations + Genetic Counselor Interns = Double Win!
Current Educational Partners
How We Work
GC Connexons is a pilot student genetic counselor (GC) matching program. Student interns are provided with an experienced genetic counselor supervisor and are expected to identify and complete at least one project for the organization during their internship.
By integrating genetic counseling students into nonprofit organizations, we enhance the capacity of patient organizations while providing students with valuable fieldwork opportunities. This partnership also provides professional development of future genetic counselors who now will have hands on rare disease experience.
Our program’s hybrid model leverages both in-person and virtual platforms, making genetic counseling services more accessible to those facing barriers. GC Connexons interns meet with genetic counselor supervisors weekly to review work, receive coaching, address questions and ensure their work is kept in alignment with the organization’s goals and mission. Pilot pulls from over 50 rare disease organizations who have expressed interest in participating.
Some Potential Project Examples:
- Content Creation and Management
- Educational Sessions
- Genetic Education Development
- Multimedia Content Production
- Community Engagement
- Policy Advocacy
- Research Assistance
- Support Group Facilitation
Message us if you are interested in learning more about the GC Connexons program!
