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Understanding the role of a genetic counsellor

Navigating life with a rare disease can be an overwhelming and isolating experience.

For rare patients and their families, the search for answers and support often feel like an uphill battle.

Genetic counselors can play a pivotal role in easing this burden — yet many rare disease patient groups remain unaware of what genetic counselors do or how they can help.

Even among those who have heard of genetic counseling, misconceptions about the service often prevent them from fully engaging with it and benefiting from the expertise it offers.

This guide aims to demystify the role of genetic counselors and highlight the essential support they can provide to individuals and families affected by rare diseases.

Genetic counselors are more than just medical professionals; they are crucial allies who offer not only medical insight but also emotional support and guidance.

They help patients understand complex genetic information, make informed decisions about their healthcare, and feel empowered as they navigate their rare disease journey.

Genetic counselors are not only a source of answers — they are a source of strength and clarity for those facing the uncertainty of a rare diagnosis.

With thanks to:

Emmanuel, currently a genetic counselling associate at GeneLinx, who generously provided his and GeneLinx’s pro-bono support to create this resource for rare disease patient groups.

Emmanuel Vitashie, BSc, is a Masters student in genetic counselling at the University of Ghana.

He is passionate about increasing genetic literacy and improving access to genomic healthcare services in Ghana.

About GeneLinx

Genelinx is a genetic counseling and education services company dedicated to making genetic guidance accessible to everyone. Our board-registered genetic counsellors provide personalized consultations in a convenient virtual format, helping patients understand complex genetic information and make informed healthcare decisions.

We partner with healthcare providers, patient advocacy groups, and individuals to deliver compassionate, evidence-based genetic counseling services across various specialties including prenatal, cancer, cardiology, and rare diseases.

At Genelinx, we believe everyone deserves access to quality genetic counseling, regardless of location or circumstances.

To learn more about our services or to schedule a consultation, visit us at gene-linx.com.

With thanks to the Funders of The Empowerment Programme 2024/2025

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Resource type

Course



Skill level

Beginner



Duration

1 hour



Last updated

March 2025



Resource type

Course



Skill level

Beginner



Duration

1 hour



Last updated

March 2025

What will you learn in this course?

Explore what a genetic counselor is and what they do

Explain how genetic counselors provide essential guidance, emotional support, and resource navigation

Highlight the emotional support and coping strategies that genetic counselors offer

Explain how genetic counselors assist in understanding test results, exploring possible genetic causes, helping families manage diagnostic outcomes, whether conclusive or uncertain

Explore genetic counselors’ role in guiding safe family planning and ensuring they’re aware of options like carrier screening and prenatal testing

Who is this course for?

This course is for all rare disease patient groups who want to understand what a genetic counselor is and the crucial role they play in rare disease care, treatment, support and management.