Becoming Your Best Advocate: Navigating Genetic Testing Through Knowledge, Support, and Empowerment

When faced with the diagnosis of a genetic condition—either personally or within the family—it can feel overwhelming to understand the next steps, communicate with healthcare professionals, and make informed decisions. In this blog article we will address: How do people learn to advocate for their own health and find psychosocial support?

Advocacy in the healthcare space, especially surrounding genetic testing, is about being informed, connected to the right resources, and having the tools to ask appropriate questions—whether you're preparing for testing, facing unexpected results, or supporting a loved one through the process.

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Why Advocacy Matters in Genetic Health

Being your own advocate means:

• Asking the right questions during genetic counseling sessions and specialist appointments
  
• Understanding your rights and protections under the law
  
• Knowing where to turn for emotional and peer support
  
• Making decisions with confidence, backed by science, community and an understanding of your own needs
  
• Ensuring your voice is heard in conversations about treatment, insurance, and care
  

Here’s how you can build your skills as an advocate by tapping into resources across five key areas:

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1. Genetic Counseling & Testing Support

What it is: Licensed professionals help individuals understand the implications of genetic testing, guide them through the testing process, and provide emotional support.

Key Organizations:

• NSGC (National Society of Genetic Counselors): Offers a searchable directory  by state and specialty to connect with certified genetic counselors.
  
• MyGeneCounsel: Provides digital tools that explain test results and keep patients updated with new findings over time.
  
• jscreen (that’s us!): A national, non-profit, public health initiative offering affordable, at-home genetic testing with virtual genetic counseling.
  
  

Why it matters: The right testing when it matters most, and professional guidance helps individuals make informed decisions and cope with unexpected or complex results.

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2. Family Experience and Patient-Specific Support

What it is: Organizations that center around community and peer support for individuals and families dealing with rare and/or genetic conditions.

Key Organizations:

• NORD (National Organization for Rare Disorders): Connects patients with disease-specific communities, support groups, and financial assistance programs.
• Disease-specific advocacy groups (e.g., Sharsheret, NTSAD, Young Breast Cancer Project, TEAL): Provide emotional, legal, financial, and workplace navigation tools for people with specific conditions or predispositions.

Why it matters: Learning from others with shared experiences helps families navigate emotional, practical, and medical challenges—and reminds them they’re not alone.

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3. Learning & Empowerment

What it is: Designated organizations, including nonprofits, and networks offering education, research updates, and training for patients to become their own best advocate.

Key Organizations:

• FORCE (Facing Our Risk of Cancer Empowered): Provides expert-reviewed resources and webinars for people facing hereditary cancer risks.
  
• Genetic Support Foundation: Offers understandable, up-to-date information on genetic conditions and testing.
  
  

Why it matters: Knowledge is power. The more patients know about their condition and options, the more equipped they are to advocate confidently.

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4. Advocacy and Legal Rights

What it is: Protection and legal support exists for those undergoing genetic testing, especially related to privacy, discrimination, and workplace issues.

Key Organizations:

• GINA (Genetic Information Nondiscrimination Act): Under GINA, it is illegal to discriminate against employees or applicants because of genetic information. This federal law protects individuals from genetic discrimination in health insurance and employment. Read more here.
  
• EveryLife Foundation: Advocates for policy changes that benefit rare disease patients and caregivers, and provides tools to help families tell their stories‍
• Global Genes: Hosts national events to support and train advocates and offers legal and ethical guidance for rare disease communities.
  
  

Why it matters: Understanding your legal rights can prevent discrimination and ensure you receive the care and coverage you deserve.

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5. Community Building and Outreach

What it is: Advocacy doesn’t stop at the individual level. Many organizations help patients raise awareness, influence research, and shape policy.

Key Organizations:

• Rare Disease Legislative Advocates (RDLA): RDLA is a program of the EveryLife Foundation for Rare Diseases, and is designed to support the advocacy of all rare disease patients and organizations. RDLA helps patients engage directly with lawmakers to improve access and funding.
• Patient Advocate Foundation: Assists with insurance navigation and helps individuals secure financial support for genetic services.
• Genetic Alliance: Offers tools for individuals and communities to drive health system change through patient-centered advocacy.
  
  

Why it matters: Getting involved in the broader advocacy landscape amplifies your voice and drives progress for others facing similar challenges.

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Conclusion

Learning to advocate for your health isn’t a one-size-fits-all process. However, with access to the right tools and support networks, individuals and families can become confident navigators of genetic testing, diagnosis, and care. Whether you're just starting the journey or supporting a loved one through it, know that you don't have to do it alone, and that advocacy is one of the most powerful tools you have.

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