Advice for patient advocates

We have been fortunate to hear from some leading patient advocates and their collaborators during this course. The team from ReNu Syndrome United have this advice to share:

• Don’t wait for perfection – just start. A simple online group can become the heart of a global network.
• Your website doesn’t need to be fancy. Focus on accuracy, clarity, and consistent updates.
• Never underestimate the reach and impact of committed family members. Build a team based on real-world skills and lived experience. Rare disease parents often have professional skills and networks that could be helpful to your community’s mission.
• Collecting patient data is essential, to understand your community and build a therapeutic roadmap. Work with trusted partners and build ethically.
• Events that blend lived experience and science spark trust, momentum, and collaboration.
• Start small, build smart, and stay rooted in the needs of your community.

Dr Rupesh Mishra has this great summary advice for patient advocates:

As a founding member of Rare Diseases Society Nepal and a clinical geneticist, my advice to patient advocates is to embrace the power of knowledge, curiosity, and collaboration.

Genomics can be complex, but with accessible resources and support, advocates can play a transformative role.

• Begin by learning the basics: knowledge about genetic testing, inheritance patterns, and variant interpretation.
• Use your lived experience to bridge gaps between patients, clinicians, and researchers.
• Advocate for equitable access to genetic services, especially in underdiagnosed and underserved communities. –Collaborate with healthcare professionals to ensure patient voices shape research, care models, and policy decisions.
• Support responsible data sharing while safeguarding privacy because shared knowledge accelerates discovery.
• Most importantly, trust that your insights matter. Your perspective helps make genomic medicine more inclusive, empathetic, and effective.

Genomics is not only about science, it’s about people, and your voice helps ensure no one is left behind.

Discussion questions:

Considering all the advice you’ve heard, is there something in particular which you will carry forward in your advocacy journey? Do you have any advice of your own, that might inspire your fellow learners?